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Thursday, April 15, 2021

Spotting Fake Science

  In The Politics of Autism, I write:

Many articles and blog posts arguing for the vaccine-autism link have the trappings of genuine academic research: tables, graphs, citations, and scientific jargon. Some of the authors have credentials such as M.D. or Ph.D. degrees. None of these things is a guarantee of scientific value, as the history of science is full of crackpot theories (e.g., AIDS denialism) that are the heavily-footnoted products of people with letters after their names. But most people will not be able to spot the scientific weaknesses of such work. Outside of academia, few understand concepts such as peer review. Jordynn Jack describes one dubious article that appeared in a non-peer-reviewed publication: “Regardless of the scientific validity of the article, though, the writers perform the writing style quite effectively. It would be difficult for the layperson to distinguish this article from any other scientific research paper, especially if one did not investigate the nature of the journal … or of the scientific response to the article.”

Frederick Hess at AEI:

[Sam] Wineburg, Stanford’s Margaret Jacks Professor of Education, studies how people judge the credibility of digital content. A former history teacher with a PhD in education psychology, he’s perhaps the nation’s leading scholar when it comes to helping people figure out what’s actually true on the Internet. I recently had the chance to talk with him about his work and the practical lessons it holds.

Wineburg approaches his work with a simple guiding principle: “If you want to know what people do on the Internet, don’t ask them what they would do. Put them in front of a computer and watch them do it.”

He recounts a 2019 experiment studying how high school students evaluate digital sources, in which 3,000 students performed a series of web tasks. One task asked students to evaluate a website about climate change. Wineburg notes, “When you Google the group behind it, you learn that they’re funded by Exxon—a clear conflict of interest. Yet, 92 percent of students never made the link. Why? Because their eyes remained glued to the original site.” In other words, looking into the source of information is essential to judging its veracity—and yet, students didn’t make that leap.

In another study, Wineburg compared how a group of PhD students and Stanford undergraduates stacked up against fact-checkers at leading news outlets in New York and Washington when it came to assessing the credibility of unfamiliar websites. He says that fact-checkers speedily “saw through common digital ruses” while trained scholars “often spun around in circles.”

Why? Wineburg concludes, “The intelligent people we’ve studied are invested in their intelligence. That investment often gets them in trouble. Because they’re smart, they think they can outsmart the Web.” The result is that when they see a professional-looking website with scholarly references, they conclude it’s legitimate. “Basically,” he says, “they’re reading the web like a piece of static print—thinking that they can determine what something is by looking at it . . . On the Internet, hubris is your Achilles heel.”

Fact-checkers employ a different approach, one that Wineburg terms “lateral reading.” This involves only briefly looking at a website, then leaving it to search for background information on the organization or group behind the original site to determine if it is worth returning to. “In other words,” he says, “they learn about a site by leaving it to consult the broader Web.”

The problem for educators, according to Wineburg, is that this goes against the grain of how teachers usually teach students to evaluate a text. Usually, students are taught to read carefully and fully, and only then render judgment. “Yet, on the Web, where attention is scarce, expending precious minutes reading a text, before you know who produced it and why, is a colossal waste of time,” Wineburg says.

In fact, the usual methods teachers use for addressing online credibility are mostly unhelpful. Wineburg laments that we often approach the subject like a game of twenty questions. We ask, “‘Is the site a .org?’ If so, ‘It’s good.’ ‘Is it a .com?’ If so, ‘It’s bad.’ ‘Does it have contact information?’ That makes it ‘good.’ But if it has banner ads? ‘It’s bad.’” The problem, he says, “is that bad actors read these lists, too, and each of these features is ludicrously easy to game.”

To help teachers wrestling with all this, Wineburg and his collaborators have created a “digital literacy curriculum” with 65 classroom-ready lessons and assessments, a complementary set of videos, and an online course on “Online Civic Reasoning” done with MIT’s Teaching Systems Lab. Wineburg notes that all of these materials are free and can be downloaded by registering at sheg.stanford.edu.

 

Wednesday, April 14, 2021

Autism at Work

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.

James Mahoney. Executive Director and Head of Autism at Work JPMorgan Chase & Co.:
A couple of years ago, I learned a startling statistic: The unemployment rate for individuals with some form of autism – often called the Autism Spectrum Disorder (ASD) – is estimated to be between 80 to 90 percent. While it’s shameful and disheartening that any subset of people would face such a challenge, what’s even more startling about that statistic is that many of these individuals are simply brilliant people–highly educated, highly capable, detail-oriented, yet unemployed.

But my employer JPMorgan Chase, like many successful organizations, looks at situations like this one and sees opportunity. Because of our size and continued growth, we have an almost constant need for talented employees – especially in technology-related fields. We thought that perhaps this could become a new untapped pool of talent.

And it has: Since rolling out our initiative, Autism at Work, a program focused on hiring employees with Autism, we have hired more than 30 individuals who have ASD and we anticipate hiring hundreds more across the globe over the coming years.

Autism manifests itself in many different forms; no two autistic individuals face the same exact challenges. To quote Melanie, a Columbus-based Chase employee whose daughter is autistic: “If you’ve met one person with autism, you’ve met one person with autism.”

These challenges may explain why unemployment for this community is so high.

Melanie explained that just getting past an interview can be difficult, especially if the interviewer is unaware of the applicant’s ASD. Her high-functioning daughter rocks back and forth and side-to-side, stutters, frequently says ‘um’ and has difficulty making eye contact. “I taught her to say, ‘Hi. I’m Billie and I have autism spectrum disorder. Just so you know I’m not weird or quirky.’”

Through partnerships with organizations that have more experience in working with individuals with ASD, we are learning to look beyond the traditional interview process to find highly qualified employees. We work closely with senior leaders across the firm to identify roles that would benefit from the talents of ASD adults and ensure we provide an inclusive work environment for these employees to thrive.

The embracement of this untapped workforce allows our company to benefit from the unique blend of talents provided by these detail-oriented, rule-bound, logical and independent-thinking individuals.

And it is paying off: Many studies show that the performance of autistic individuals in certain functions exceeds their peers without autism.

Jon, a quality assurance analyst at Chase, said his strongest attribute is to assess situations and come up with the best possible solutions in order to make them more organized and more efficient.

“I would encourage anyone on the spectrum to embrace what makes them different and see it as their greatest strength,” he said. “I firmly believe that companies could always benefit from having employees who see things in an unconventional way, which is something to remember any time an individual on the spectrum is seeking a job.” 
He said the Autism At Work program opens a door for those “who may not be the best at traditional interviews, to show off their unique skills in a workplace environment. Some people on the spectrum simply are not given a chance to shine through conventional means. This program is a great way to facilitate that.”


The success of Jon and others confirm that their skill set simply requires an environment in which to contribute and thrive. And that provides a winning solution for all of us.

Tuesday, April 13, 2021

Ernst and Young's Boston Neuro-Diverse Center of Excellence

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.

An April 12 release from Ernst and Young:
Today, Ernst & Young LLP (EY US) announced the launch of the Boston Neuro-Diverse Center of Excellence (NCoE), aligning with Autism Awareness Month in April. The Boston NCoE, the sixth of its kind opened by EY US, is the first in New England and is designed to apply the talents of neurodivergent individuals to meet clients’ business needs.

The Boston NCoE will open with a founding team of 10, which includes individuals with cognitive differences such as dyslexia, ADHD, autism and Asperger syndrome. These professionals will join existing EY US client teams of nearly 2,300 professionals in the Greater Boston area working in consulting, intelligent automation, data analytics, cybersecurity, assurance, tax and more. Through community and professional relationships, the number of individuals at the NCoE is poised to grow over time. Several prominent organizations have also stepped up to help drive awareness and increase the employment rate of neurodivergent individuals. These organizations are truly “accelerators” around neurodiversity for the Boston area.

Jane Steinmetz, Boston Office Managing Principal, Ernst & Young LLP, says, “The Boston NCoE will not only transform the way we help our clients across New England, but it underscores our deep commitment to diversity, inclusiveness and opportunity for all. These team members bring unique skills to the firm and will be able to support clients through innovative work and thinking. We’re always looking to build a better working world and create inclusive employment opportunities that benefit EY, the businesses we serve and most importantly those we hire. The Neuro-Diverse Centers of Excellence have reimagined the traditional hiring processes and created environments more conducive to the needs of a neurodivergent individual that unlock tremendous talent potential.”

Over the past five years, EY US has customized the NCoE hiring, training and onboarding process to be more inclusive for our neurodivergent colleagues. One such adjustment is shifting from a behavior-based interview process to a performance-based process. We have also allowed additional time for team members to absorb and retain the information we share during onboarding and training. This comprehensive approach provides structure around the team to ensure success and promotes psychological safety for true belonging and equity. This comprehensive approach provides structure around the team to help ensure success and promotes psychological safety for true belonging and equity.

EY US created the NCoE model after recognizing a need to drive growth for businesses by accessing the tremendous untapped talent of neurodivergent individuals. The contributions of NCoE professionals help to enhance workforce ability and support clients in accelerating technology processes and solutions while meeting the changing demands for jobs, tasks and skills – such as intelligent automation, blockchain, cybersecurity, cloud optimization, true data science and analytics.

In addition, EY US recognized the significant employment roadblocks faced by people experiencing neurodiversity. It’s estimated that up to 85% of autistic adults are unemployed or underemployed, according to the Centers for Disease Control and Prevention.

Hiren Shukla, EY Global and Americas Neuro-Diverse Center of Excellence Leader, says, “The EY NCoEs activate the exponential power of neurodiversity by creating inclusive high-performance teams. By spearheading this journey of incorporating and curating cognitive differences into teaming models, we are positioning ourselves to solve transformation challenges directly and have a competitive advantage in the market.”

Neurodivergent individuals, such as those with dyslexia, Asperger syndrome or autism, make up approximately 20% of the global population and excel in data analytics and software management that supports emerging technologies, including artificial intelligence, automation, blockchain, cyber and more. These skills are a great asset to EY US clients, and with the addition of this Center, the team in Boston will be able to offer an even higher standard of service.

Members of the founding Boston NCoE team, many of whom were previously not fully engaged in the workforce, are now embedded in the fabric of the firm. EY US is committed to sharing leading practices and helping other companies similarly engage the neurodivergent community. EY US co-founded the Autism at Work Employer Roundtable and sponsored conferences to share knowledge with other employers, ranging from large multinational companies to other businesses looking to launch neurodiversity hiring efforts. The firm also helped create a 60-page playbook explaining how to develop a neurodiversity program.

EY US introduced its first neurodiversity center in Philadelphia in 2016 and has since expanded to six cities across the US, as well as one in both Canada and India. The firm plans for cities in South America, Asia-Pacific and Europe to join the network soon.

Monday, April 12, 2021

Biden Proposes IDEA Funding Boost

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

From President Biden's request for fiscal year (FY) 2022 discretionary funding:

 Increases Support for Children with Disabilities. All children—including those with disabilities—should be provided with the services and support they need to thrive in school and graduate ready for college or a career. To this end, the discretionary request provides $15.5 billion for Individuals with Disabilities Education Act (IDEA) grants that support special education and related services for students with disabilities in grades PreK through 12. This historic $2.6 billion increase would, for the first time in eight years, increase the Federal share of the cost of providing services to students with disabilities, and is a significant first step toward fully funding IDEA. The discretionary request also provides $732 million for IDEA Part C, an increase of $250 million above the 2021 enacted level. IDEA Part C supports early intervention services for infants and toddlers with disabilities or delays and funds services that have a proven track record of 8 improving academic and developmental outcomes. This increase in funding would be paired with reforms to improve access to these vital services for underserved children, including children of color and children from low-income families.

Sunday, April 11, 2021

VAERS

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

Corbin Duncan at The Harvard Political Review:
When the Vaccine Adverse Event Reporting System (VAERS) was established in 1990, its creators at the Food and Drug Administration (FDA) and Centers for Disease Control and Prevention (CDC) would have scarcely imagined the government program would become a leading vector for vaccine misinformation amidst a global pandemic.

The VAERS dataset was created to manage reports of vaccine-associated side effects. With the authority of the CDC, whose official seal adorns the webpage, VAERS packs a shock. As of today, the online database alleges 1349 U.S. deaths attributable to COVID-19 vaccines. The database makes for gruesome reading, with side-effects of the vaccine appearing to include brain death, herpes and even one case of a gunshot wound. Quite the vaccine.

These statistics are, of course, patently false. Claims made by the VAERS database now form the foundation of a global online misinformation campaign which to-date has garnered little attention. The startling statistics are being shared far and wide by anti-vaccination activists and concerned readers alike. And the CDC’s role in the dissemination of vaccine misinformation, unwilling though it may be, is attracting increasing scrutiny as it jeopardises what President Biden calls his administration’s “most important battle”: the global coronavirus vaccine rollout.

The CDC describes VAERS as a “passive reporting system.” Pre-dating the internet, the VAERS database has virtually no guards against its potential role as a source of “fake news” and is credulous of even the most fanciful claims of COVID-19 vaccine side-effects. VAERS reports “can be submitted voluntarily by anyone, including healthcare providers, patients, or family members.” The CDC acknowledges the “quality and completeness” of reports “often lack details and sometimes can have information that contains errors.” Beyond that disclaimer, the CDC tries to ensure its readers know the data is inaccurate by offering users terms and conditions, which are presumably mostly unread, and a checkbox to acknowledge their contents. A federal agency seeking to disabuse citizens of the expectation that government health databases are accurate should be an indicator for the CDC that VAERS has a serious problem.

Beatrice Dupuy at AP:

Posts online are sharing VAERS data without any context. Screenshots of the data being shared online give a vague description to paint a much darker version of reality and mislead social media users into believing that the vaccine is causing more adverse events than the public is being told.

“VAERS - A MUST WATCH!!!!,” one video showing VAERS data on Instagram said. “I bet you haven’t seen any of THIS information about the COVID-19 vaccine covered on CNN, or any off the other treasonous corrupt mainstream media!”

Some screenshots show only a VAERS identification number, the age of the person who was vaccinated, the day they received the vaccine and the day they died to suggest that people are dying from the vaccine. The posts with misleading captions are being widely shared across social media platforms.

“I have not seen any data supporting that the vaccine caused a relationship with an increase in mortality rate or something like that,” said Dr. Werner Bischoff, an infectious disease specialist at Wake Forest University.

According to the CDC, VAERS does not determine if the vaccine caused the reported adverse events, which can often happen coincidentally after immunization.

VAERS has often been misrepresented by anti-vaccine advocates, and the distribution of a COVID-19 vaccine has brought more attention to the surveillance system.

There was a time when a number of reports in VAERS were from people concerned that vaccines were causing autism, which has been debunked, said Dr. James Campbell, professor of pediatrics and infectious diseases at the University of Maryland School of Medicine.

 

Saturday, April 10, 2021

The Great Divide

 

From the preface to The Politics of Autism.

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.

Isabel Alexander at STAT:

The great divide in the autism community occurs between those who view autism as a unique — and perhaps advantageous — extension of typical brain wiring versus those who experience the potentially debilitating symptoms of the condition. In other words: Is autism a gift or a public health crisis?

Maybe it’s both. For every proud story of idiosyncrasy and unabashed connection, for every open mind and open door, there is a story of suffering, of sacrifice, and of soreness that comes with navigating a world of missing links — a world of enormous complexity at both synaptic and societal levels.

Throw in an unprecedented global pandemic, and the spectrum of the autism experience becomes wider, deeper, and more complex. On one end, there may be comfort in seclusion: the virtual realms catalyzed by Covid-19 can alleviate the anxiety, communication barriers, and sensory overload experienced by some people with autism during in-person interactions. On the other end, the pandemic has upended routines for a population that craves predictability and structure, interrupted behavioral and educational interventions outside the home, and multiplied the need for emergency psychiatric assistance at a time of reduced capacity. Given the high rates of comorbid mental illness among people with autism, these scars may last long after societal reopening.

Now more than ever, autism awarenessand increasingly acceptance — should mirror the spectrum of the condition: a celebration of fortitude and uniqueness as well as a recognition of the pain that may lie below the surface.

Friday, April 9, 2021

Autism, COVID, and Food Insecurity

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

From Autism Speaks

In November and December of 2020, we sent a follow-up survey to a larger group of recipients. This time, we asked even more detailed questions about how they were being affected by the pandemic, where they live and their situations. This helped us understand more about who is experiencing the most hardship due to COVID-19 so that we can focus our efforts on outreach and support into those communities. Here’s what we learned: FINDING: Households of people with autism are experiencing significant food insecurity, especially minority households, compared to households with no disability. 

HOUSEHOLD FOOD INSECURITY RATES BEFORE AND AFTER COVID-19

  • Children with no disability 20%  before 27.1% after
  • Children with autism 41% before 57% after

         HOUSEHOLD FOOD INSECURITY RATES, FALL 2020

  • No disability 27.1%
  • Person with autism, white 43.8%
  • Person with autism, black non-Hispanic 65.7%
  • Person with autism, Hispanic 74.5%

 Source except where noted: Food Insecurity in Households of People with Autism Spectrum Disorder During the COVID-19 Pandemic, Autism Speaks, December 2020.

*Source: Karpur A, Vasudevan V, Frazier T, Shih A, Lello A. Food Insecurity in the Households of Children with Autism Spectrum Disorders and Intellectual Disabilities in

the U.S.: Analysis of the National Survey of Children’s Health Data 2016 - 2018. Autism. (in review).

**Source: https://disabilitycompendium.org/event

Thursday, April 8, 2021

Another Bad Encounter with Law Enforcement

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

Alene Tchekmedyian at LAT
When Isaias Cervantes spiraled into a mental health crisis last week, his family called 911. A sister and a therapist who works with Cervantes told the Los Angeles County sheriff’s deputies who responded that the agitated 25-year-old had autism and was hard of hearing, according to another sister and a lawyer for the family.

Despite the alleged warnings, the encounter quickly escalated and ended minutes later when a deputy shot Cervantes, causing injuries that could leave him paralyzed.

“Knowing he may not walk, it’s just not right,” said a sister, Yajaira Cervantes. “I wish that they would be more trained officers that know how to deal with disabilities.”

She and a group of demonstrators gathered outside the Hall of Justice downtown on Monday afternoon, some carrying signs that said “Justice for Isaias.”

The Cudahy City Council on Tuesday called for independent investigations by the U.S. Department of Justice, the FBI and the California attorney general. The council also requested that the deputies involved in the shooting be removed from patrol duties in the city.

...
Judy Mark, who runs Disability Voices United, a group that advocates for people with disabilities, said she also helps train police officers on how to approach people with mental disabilities. She said that after the shooting of Cervantes, she has decided she no longer can participate in those training sessions. Unarmed mental health experts, she said, should respond to calls involving mental health issues instead of the police.

“I’m done with the collaboration — we have to create a different way. There is just too much resistance to reform,” said Mark, who has a 24-year-old son with autism. “As families we do not feel safe in reaching out to 911 or police for any circumstance where we may need assistance, so there’s got to be a better way.”

Wednesday, April 7, 2021

Portantino Bill on Insurance

The Politics of Autism includes an extensive discussion of insurance.

From Pasadena Now:
Senate Bill 562, authored by Senator Anthony J. Portantino (D – Pasadena), passed the Senate Human Services Committee Tuesday. The measure will eliminate barriers to help patients with Autism Spectrum Disorder (ASD) access Behavioral Health Treatment (BHT) in California.

“SB 562 will increase healthcare access to many autistic patients in California,” Portantino said in a prepared statement.

“Statistics tell us that 1 in 59 children born today are diagnosed with autism. Early intervention is the key to helping these children live up to their potential and health insurance coverage for behavioral health treatment is critical. Research has proven that children with autism greatly benefit from behavioral health treatments and show remarkable progress,” Portantino statement read. “By expanding the types of qualified state certified coverage, this bill will allow children to receive the treatment their physician has prescribed in a timely manner.”

Current law requires that health insurance companies cover all physicians or psychologists 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.

Additionally, a shortage of network providers has created a six to twelve month wait list for BHT services.

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.

“The DIR/Floortime Coalition of California wants to thank Senator Portantino for his ongoing leadership and support on behalf of California families,” said Andrea Davis, President of the DIR/Floortime Coalition. “Senate Bill 562 will help Californians with autism receive the treatment prescribed by their physician treatment that they both need and deserve. For too long Californians on the autism spectrum have only been covered for one type of behavioral health treatment. This legislation will correct that and allow Californians to receive the physician-prescribed, medically necessary, evidence-based treatment approach selected specifically for them. Not all Californians with autism are alike. They deserve a treatment approach chosen for their specific circumstances and needs. Treatments chosen specifically for the client will allow them to achieve their full potential and lower costs for the state, for the insurance company, and for the family. We are happy to support this much needed legislation.”

SB 562 is sponsored by the DIR/Floortime Coalition of California. Supporters of the bill include: Center for Developmental Play and Learning, Cherry Crisp Entertainment and Productions, 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, Professional Child Development Associates, Stanford University Schwab Learning Center, the Washington Elks Therapy Programs for Children, INC., and Touchstone Family Development Center.

Tuesday, April 6, 2021

Child and Family Attributes and Outcomes

Uncertainty is a major theme of The Politics of Autism. Here is how I start chapter 3:

If we can land a man on the moon, why can’t we cure autism? Frustrated parents may ask that question, remembering that when John F. Kennedy committed the United States to go to the moon, NASA scientists and engineers figured out how to get there. Ever since Neil Armstrong stepped off the lunar module in 1969, politicians have held up the Apollo project as a model for solving all kinds of problems. But autism is not rocket science. Contrary to the usual meaning of that expression, I hardly suggest that autism science is simple; rather, it is more puzzling than rocket science.
When the moon program was getting under way, there was consensus about the fundamental terms and facts. Although the engineering details were challenging, the basic math and physics behind the mission dated back to Isaac Newton. Autism is different. As we have already seen, it is a contested concept with many uncertainties. Just picture an Apollo program in which experts saw different kinds of moons in different parts of the sky and were not quite sure about the laws of motion.

 Peter Szatmar and colleagues have an article at JAMA Network Open titled "Association of Child and Family Attributes With Outcomes in Children With Autism."

Key Points

Question How prevalent is “doing well” in 5 developmental domains (communication, socialization, activities of daily living, internalizing, externalizing) as assessed by proficiency and growth in children with autism spectrum disorder in midchildhood, and what attributes of children and families are associated with it?

Findings In this cohort study including 272 children, between 20% and 49% of children with autism spectrum disorder were proficient within the 5 developmental domains, while 13% to 34% of children demonstrated growth. Doing well was associated with preschool scores on that specific outcome domain, as well as early language skills, household income, and family functioning.

Meaning These findings demonstrate the potential usefulness of taking a strengths-based approach to outcome assessments, while the importance of family income and functioning remind us that disabilities do not exist apart from a social context.

From the article:

The finding that family functioning is an important factor in several aspects of doing well suggests a new area of research focusing on the community and societal factors, whereby a well-functioning family might be able to improve outcomes for a child with ASD. Although we know that both proximal (ie, family functioning) and distal (socioeconomic disparities) contextual factors can influence typical child development, little research on psychosocial mediators and moderators of outcomes has been done in ASD. Our data support the need for such enquiries. One potential hypothesis to pursue is the possibility that higher income and good family functioning allow a family to access more resources or to apply developmentally appropriate and evidence-based interventions with greater fidelity. A research program embedded in a health services framework would be better positioned to address this issue in finer detail, especially given the results of the meta-analysis from Rogers et al10 of early interventions.

Because doing well is not a unitary construct, supporting children to do well will take a multipronged effort to address child, family, community, and societal factors. Systematically addressing the full breadth of modifiable factors during a child with ASD’s development may ensure that more children will do well over time.

 

Sunday, April 4, 2021

Engaging Autistic People in Autism Research


 In The Politics of Autism, I discuss the sources of autism research funding -- and the opinions of autistic people about research priorities.

Mike McNulty at USC:
For too long, too few autistic people have had a say in how autism research is designed, developed and disseminated, and researchers have not tapped into the expertise that only autistic people and their families have. A new USC-coordinated project looks to upend that disparity by intentionally allying with stakeholder groups, engaging community partners and exploring ways of better responding to this diverse community in the future.

The TRUST project — short for Transforming Research: Understanding Sensory Experiences in ASD, Stakeholders Working Together — is a new, two-year project supported by a $243,000 award from the Eugene Washington PCORI Engagement Awards program, an initiative of the Patient-Centered Outcomes Research Institute (PCORI). The institute is an independent, nonprofit organization authorized by Congress in 2010 to fund comparative effectiveness research that will provide patients, their caregivers and clinicians with evidence to make better-informed health and health care decisions.

“We will particularly attend to the ‘autistic voices’ of underrepresented or underserved communities and ensure that individuals who have been marginalized due to stigma, social behavior or verbal abilities are included,” said Professor Mary Lawlor, TRUST project lead at the USC Chan Division of Occupational Science and Occupational Therapy. “Autistic people have really important expertise, and it’s exciting to engage people in the community who really want to share their expertise too.
The TRUST project begins by convening four groups of stakeholders: autistic self-advocates, family members and caregivers, researchers and interdisciplinary service providers, including occupational therapists. Lawlor, who is jointly appointed to the Keck School of Medicine of USC’s Department of Pediatrics, will facilitate conversations using narrative-based strategies, which give space for people to tell their own stories with their own words about what matters most in their own lives. These stakeholder groups will then coalesce to identify new research priorities, amplify engagement of the autism community in research, foster mutual trust and expand tools for enhancing future patient-centered outcomes research.

A sustainable alliance will propel stakeholder engagement in future research that extends beyond the project’s funding window and serve as a model for research projects outside of Southern California to replicate.

“A lot of researchers think that there is only one right perspective and can’t deal with differences effectively,” Lawlor said. “But you need to have opportunities like this, with multiple perspectives at the same table, to make people feel heard and seen.”
According to Lawlor, the TRUST project will narrow several glaring gaps in the existing literature about the sensory experiences of autistic people.

First, autism research has traditionally focused on children, with relatively less attention paid to the experiences of autistic adolescents and adults. Second, autism research has oversampled white/Caucasian participants and regrettably undersampled populations with racially and ethnically diverse backgrounds. Third, research has disproportionately focused on so-called “high functioning” participants — autistic people who perform and participate in everyday activities and roles wholly or largely independently. Lastly, the uptake of sensory processing research has been slow in clinical arenas, in part because service providers are rarely engaged in university-based research studies.

“Clinicians, as much as anybody, should be involved at the starting point of research,” said Erna Blanche, a clinical professor at USC Chan, lead contributor to the TRUST team and co-lead of the Clinician and Provider Stakeholder Group.

Blanche is also a member of the Sensory Processing and Autism Network, one of the four officially designated community partners contributing to the TRUST project. It’s a community-based research network based out of USC Chan that works to improve outcomes for people with sensory processing challenges and their families in everyday life.

Though each person with autism is unique, sensory processing challenges and sensitivities to a wide range of stimuli are cited as a common experience. Occupational therapists like Blanche frequently work with children on the autism spectrum to address sensory-processing differences to more fully engage in their daily activities, relationships and roles.

Blanche says that the TRUST project is an extension of SPAN’s ongoing efforts for knowledge mobilization, an approach to research whereby university and community partners work hand in hand, start to finish, in order to co-produce knowledge and maximize their impact outside of academia.

“In a way, people with autism have been unjustly disenfranchised,” Blanche said. “This will now bring them into the research fold in a much more meaningful and systematic way.”

In addition to SPAN, three other nonprofit organizations are officially named as TRUST project partners, and this network is likely to expand over the coming years:
  • 5-Eleven Hoops is a nonprofit, basketball-based organization based in Long Beach. Founded by former pro basketball player Stacy McAlister, who has a son with autism, 5-Eleven Hoops uses active play strategies to enhance positive outcomes for youth with autism and other special needs and their families by building sportsmanship, social skills, coordination, strength and cognitive development.
  • Autism Speaks is the largest autism advocacy organization in the United States and sponsors autism research and conducts awareness and outreach aimed at families, governments and the public, including activities every April 2 in honor of World Autism Awareness Day.
  • Harbor Regional Center, located in Torrance, is one of the state’s 21 regional centers that contracts with the Department of Developmental Services. The nonprofit organization serves nearly 15,000 people who have developmental disabilities and their families in the South Bay, Harbor, Long Beach, and southeast areas of Los Angeles County.
...

For further information about the TRUST project, contact Emily Ochi or Mary Lawlor.

Saturday, April 3, 2021

Private Equity and Autism


John Summers at The Nation:
The private equity industry is now making a play for this lucrative market. Blackstone acquired the Center for Autism and Related Disorders for a reported $700 million in 2018. The next year, Rothschild acquired New England ABA. Civitas Solutions, LEARN Behavioral, and Autism Learning Partners have been operating in Massachusetts as subsidiaries of other private equity firms since 2017. How have these acquisitions influenced the quality of clinical care? How many more agencies are courting investments?

We may learn the answers only after it is too late to refine the questions. Carolyn Kain, executive director of the Massachusetts Autism Commission, told me that “some discussion” has alighted on the issue. The Autism Commission is charged by statute to make policy recommendations in this area. “To be honest with you,” Ms. Kain replied to my inquiry, “I don’t have a lot of experience, information, or knowledge about private equity firms purchasing autism organizations. It was something that was raised, but there hasn’t been any further examination.” The trend has not attracted interest from researchers either. A 2019 editorial on “Private Equity Investment in Behavioral Health Treatment Centers” in JAMA Psychiatry, a journal of the American Medical Association, found “no peer-reviewed literature” on this subject. A handful of articles and papers report that agencies acquired by private equity employ under-trained, unlicensed therapists and engage in serial abuse. Those impressions appear to comprise the extent of disinterested knowledge.

In the ABA field itself, the private equity prospect evokes stronger feelings. I spoke with Vincent Strully, founder and president of the nonprofit New England Center for Children (NECC), a leading ABA agency provider. With an annual operating budget north of $100 million, NECC’s services include early intervention, day schooling, residential treatment, and professional training. NECC operates 65 “partner classrooms” in New England’s public schools, where ABA is the exclusive service model. For all these reasons, private equity has been circling NECC for years. “It’s running wild,” Strully laments of the private equity “craze.” Rather than joining established agencies, he told me, autism entrepreneurs in Massachusetts are striking out on their own, reaching $10 million in annual revenue, and then “recapitalizing” their organizations for venture capital’s bigger bucks. The investors are expecting a 15 to 20 percent return in five to eight years. “My advice to everyone involved is: ‘Don’t do it,’” Strully opined. “I think inevitably it is incompatible with quality service delivery. I think it is a mistake.” Strully declines to take what he regards as a radical leap. He foresees the current boom will crash when insurers balk and venture capitalists recalculate and realize they have overpaid.

“It’s astounding to me that you can become a multimillionaire behaviorist.” That is Dr. Paul A. Dores, a psychologist and behavior analyst in practice for 50 years, answering my further query. Dores worked as a behaviorist for many years in Massachusetts, concerning himself with ethics, before moving his practice to California. He points an accusing finger at a misalignment between the mechanisms of payment and treatment. “In the autism field,” he told me, “the people who are paying the money are separated from the people evaluating the results, and the ones connected to the results don’t always know good results from bad results. And so the feedback loop that would normally tell you, if you are bad at what you do, you should be out of business—that’s broken. There’s not enough accountability, and there’s more work than there are people to do it, and as a result we have a lot of really bad behavior analysis that’s going on while the people doing it are getting rich.”

Friday, April 2, 2021

World Autism Awareness Day

In The Politics of Autism, I discuss efforts to raise the issue's profile.

President Biden's Proclamation:

On World Autism Awareness Day, we celebrate the countless ways that people with autism contribute to our families, our communities, our Nation, and the world, and we shine a light on the systemic barriers people with autism face in their daily lives.

More than 2 percent of American adults and 1 in every 54 of our children have autism — a community of millions who deserve to live full lives of dignity and respect. My Administration is committed to funding cutting-edge research to help us to better understand autism and related health conditions in order to improve quality of life for people with autism and their families in every community.

Recent Government initiatives have focused on detecting autism in the first year of life, funding new national research networks to improve our knowledge of autism, and advancing services and support to help Americans with autism live independently in their communities. A recent apprenticeship initiative from the Department of Labor seeks to open up career pathways for people with autism and other developmental disabilities in thriving fields like information technology and health care. Investments like these and others that we continue to pursue are critical to expanding possibilities and improving life for all people with autism.

Meanwhile, agencies across the Federal Government are working to protect the rights of all people with disabilities — including people with autism — while also advancing equity when it comes to accessing vital services and supports. Our research agencies are working to reduce barriers in access to early diagnoses, interventions, and services for people with autism — including those from diverse racial, ethnic, and cultural backgrounds and rural communities — and to incorporate the perspectives of individuals with autism in scientific research. For too long, disparities in access to health care, education, and services have placed an undue burden on individuals with disabilities and their loved ones, particularly those from underserved communities. My Administration is committed to addressing these inequities in partnership with the Interagency Autism Coordinating Committee and the National Autism Coordinator of the Department of Health and Human Services.

We also recognize that the COVID-19 pandemic has caused unique disruptions to, and placed new strains on, the lives of individuals with autism and their families. All Americans should be grateful for the creativity and dedication of educators, health care providers, and others who have rapidly adapted to the limitations of the pandemic by offering virtual learning, telehealth appointments, and other remote services. My Administration is working tirelessly to get America vaccinated, get our children safely back in school, and deliver direct economic relief to families across the country in order to end this year of disruption and alleviate as much of the burden as possible. In addition, agencies including the Centers for Disease Control and Prevention, the National Institutes of Health, and the Department of Education are hard at work developing data-driven guidance to help people with disabilities and their families mitigate the far-reaching effects of the pandemic.

Today, we honor those with autism and recommit ourselves to providing them and their families with the investment, support, and care they need to live independently, fully participate in their communities, and live fulfilling lives of dignity and opportunity.

NOW, THEREFORE, I, JOSEPH R. BIDEN JR., President of the United States of America, by virtue of the authority vested in me by the Constitution and the laws of the United States, do hereby proclaim April 2, 2021, as World Autism Awareness Day. I call upon all Americans to learn more about autism to improve early diagnosis, to learn more about the experiences of autistic people from autistic people, and to build more welcoming and inclusive communities to support people with autism.

IN WITNESS WHEREOF, I have hereunto set my hand this first day of April, in the year of our Lord two thousand twenty-one, and of the Independence of the United States of America the two hundred and forty-fifth.

JOSEPH R. BIDEN JR.


Thursday, April 1, 2021

Autism Acceptance Month

From the preface to The Politics of Autism.

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.

 Christopher Banks, CEO of the Autism Society, at The Hill:

This year, the Autism Society of America is working with partner organizations to advocate for a formal designation to make April Autism Acceptance Month, putting into words the value of inclusive policies, practices and support services for those affected by autism.

A formal designation to make April Autism Acceptance Month in the United States is a stake in the ground. It says, ‘we will commit to a national effort to ensure individuals with autism are integrated into our social, political and economic fabric.’

Autism rights is a human rights issue. The federal designation makes clear that the citizens of the United States of America who are members of the autism community are entitled to the same rights and benefits as anyone else in our country.

From the Autism Society:

Autism community advocates across the country have a long-standing history of using the term “acceptance” as a means of more fully integrating those 1 in every 54 Americans living with autism into our social fabric. The Autistic Self Advocacy Network (ASAN) has been framing April as Autism Acceptance Month since 2011, stating “Acceptance of autism as a natural condition in the human experience is necessary for real dialogue to occur.”

Other groups that have been using ‘acceptance’ through the month of April include the Administration for Community Living, Association of University Centers on Disabilities, Autistic Women and Non-Binary Network, Easter Seals, First Place AZ, National Association of Councils on Developmental Disabilities (NACDD), and The Arc.