Baby Food

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

If you listen to Sirius XM, you may have heard radio ads about a class action lawsuit alleging that acetaminophen causes it.  There is a similar ad about baby food.

But there is a very long and growing list of other correlates, risk factors, and possible causes that have been the subject of serious studies.

Susan Goldhaber at the American Council on Science and Health

I almost drove off the road listening to an ad from a law firm urging parents with children with autism spectrum disorder (ASD) to be part of a lawsuit suing baby food manufacturers for causing their child’s condition. According to the ad, the question of what causes ASD has been settled and what remains is for parents to get what is owed them from baby food manufacturers that have been hiding the truth from the public for years

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Let us look at a review article that examined the available studies on this topic:

A 2019 review examined 14 studies that investigated the association between arsenic and 37 studies that examined the association between lead and ASD. The studies:

• Divided children into two groups – those diagnosed with and those without an ASD diagnosis
• Determined whether there was a statistically significant difference in the measured arsenic or lead levels in the hair, blood, or urine of the two groups of children.

The studies did not determine causality; they identified a correlation.

• Out of the 14 studies on arsenic exposure, 8 (53.3%) reported a positive association.
• Out of the 37 studies on lead exposure, 19 (51.3%) reported a positive association.

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Class action lawsuits are not new in the U.S., but their scientific basis has weakened over the years. The current lawsuits over ASD and baby foods are based on weak scientific evidence of an association, where even the researchers cannot show a consistent association and no evidence that baby foods cause ASD. 

The Central Conspiracy Theory

 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.

The antivax movement is part of a broader system of right-wing conspiracy theory.

David Gorski at Science-Based Medicine:

The single biggest change that I’m going to make in my assessment of how to recognize an antivaxxer now as compared to 2012 grows from a revelation that I came to a few years after my post on recognizing what makes an antivaxxer, namely that all antivaccine beliefs are rooted in conspiracy theories, specifically what I have called the central conspiracy theory of the antivaccine movement. In 2014, that conspiracy theory was simple. Basically, repeating and believing antivaccine conspiracy theories is arguably the strongest indicator that you are dealing with an antivaxxer, so much so that if you see someone spewing antivax conspiracy theories and being utterly resistant to questioning them, that in and of itself is enough to identify an antivaxxer. Indeed, all antivax conspiracy theories tend to be variations on a theme, namely that “They” know that vaccines don’t work/are harmful, but “They” covered it up. It’s the same conspiracy theory at the heart of, for example, Kevin Trudeau’s famous book Natural Cures “They” Don’t Want You to Know About. In the US this central conspiracy theory posits that the Centers for Disease Control and Prevention (CDC) “knew” that vaccines cause autism.

Antivax Twitter

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

Melody Schreiber at The Guardian:

As the troubled social media platform Twitter rolled out a paid verification system and laid off thousands of content moderators, health misinformation accounts on the social network began pushing their messages to a wider audience than ever.

Under Elon Musk’s new direction for Twitter, several anti-vaccine accounts with tens of thousands of followers are now verified by paying $7.99 a month for Twitter Blue.

Social media sites have long struggled with misleading information and content moderation.

“There’s always been misinformation on the platforms,” said Sarah Barry, a vaccine advocate. Social media companies “only respond when something gets reported on, but they’re not actually proactively watching these groups”, she said.

...

Before the change in leadership, Twitter was working to remove some accounts that spread anti-vaccine disinformation.

But “now it looks like Twitter’s giving these accounts some legitimacy”, said Peter Hotez, a vaccine scientist and dean of tropical medicine at Baylor College of Medicine.

“It looks like now they’re going to move in the wrong direction, and actually help promote groups that are touting anti-vaccine, anti-science disinformation.”

Autism, COVID, and Quackery

 Autism parents are highly vulnerable to pitches for quack "cures."

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.

The quacks have branched out from autism to COVID. 

CORRECTED: As I've said before, the autism panics of the 1990s and 2000s set the precedent for modern-day snake oil about Covid. First with vaccines and now with junk science cures. The autism panics were to Covid what the Hobbit was to Lord of The Rings (with more Orcs). https://t.co/qiDZkwgOYU

— Eric Michael Garcia (@EricMGarcia) November 25, 2022

Inclusion is Good Business

 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.

Nora Genster at USA Today:

American employers favor an idealized and frankly imaginary employee, who is young, able-bodied, neurotypical and unchanging. The problem is this employee does not exist.

The reality is as many as 25% of job seekers and current employees are people with disabilities, with that number potentially surging as millions of Americans cope with long COVID-19. As leaders continue to grapple with the tight labor market and look at grim economic forecasts for the coming year, they will have to make careful investments to make sure all employees, including those with disabilities, can do their best work.

It is simply good business.

An Accenture study found that businesses that are leaders in disability employment and inclusion had on average 28% higher revenue, double the net income and 30% higher economic profit margins compared with their peers.

The Measles Threat

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 measles, COVID, flu, and polio.

CDC:

Measles vaccination coverage has steadily declined since the beginning of the COVID-19 pandemic. In 2021, a record high of nearly 40 million children missed a measles vaccine dose: 25 million children missed their first dose and an additional 14.7 million children missed their second dose, a joint publication by the World Health Organization (WHO) and the United States Centers for Disease Control and Prevention (CDC) reports. This decline is a significant setback in global progress towards achieving and maintaining measles elimination and leaves millions of children susceptible to infection.

In 2021, there were an estimated 9 million cases and 128,000 deaths from measles worldwide. Twenty-two countries experienced large and disruptive outbreaks. Declines in vaccine coverage, weakened measles surveillance, and continued interruptions and delays in immunization activities due to COVID-19, as well as persistent large outbreaks in 2022, mean that measles is an imminent threat in every region of the world.

“The paradox of the pandemic is that while vaccines against COVID-19 were developed in record time and deployed in the largest vaccination campaign in history, routine immunization programs were badly disrupted, and millions of kids missed out on life-saving vaccinations against deadly diseases like measles,” said WHO Director-General Dr Tedros Adhanom Ghebreyesus. “Getting immunization programs back on track is absolutely critical. Behind every statistic in this report is a child at risk of a preventable disease.”

The situation is grave: measles is one of the most contagious human viruses but is almost entirely preventable through vaccination. Coverage of 95% or greater of 2 doses of measles-containing vaccine is needed to create herd immunity in order to protect communities and achieve and maintain measles elimination. The world is well under that, with only 81% of children receiving their first measles-containing vaccine dose, and only 71% of children receiving their second measles-containing vaccine dose. These are the lowest global coverage rates of the first dose of measles vaccination since 2008, although coverage varies by country.

Many People with Disabilities Lack Long-Term Care Plans

In The Politics of Autism, I write:

Many analyses of autism speak as if it were only a childhood ailment and assume that parents are the main stakeholders. But most children with autism grow up to be adults with autism, and they suffer uniquely high levels of social isolation. Almost 40 percent of youth with an autism spectrum disorder never get together with friends, and 50 percent of never receive phone calls from friends. These figures are higher than for peers with intellectual disability, emotional disturbance, or learning disability. When school ends, many adults with autism have grim prospects. Though evidence is sparse, it seems that most do not find full-time jobs. Compared with other people their age, they have higher rates of depression, anxiety, bipolar disorder, and suicide attempts.

Sam Whitehead at Salon:

Experts say many people with intellectual and developmental disabilities do not have long-term plans for when family members lose the ability to help them access government services or care for them directly.

Families, researchers, government officials, and advocates worry that the lack of planning — combined with a social safety net that's full of holes — has set the stage for a crisis in which people with disabilities can no longer live independently in their communities. If that happens, they could end up stuck in nursing homes or state-run institutions.

"There's just potential for a tremendous human toll on individuals if we don't solve this problem," said Peter Berns, CEO of the Arc of the United States, a national disability-rights organization.

About one-quarter of adults in the U.S. live with a disability, according to the Centers for Disease Control and Prevention. Nearly three-quarters of Americans with disabilities live with a family caregiver, and about one-quarter of those caregivers are 60 or older, according to the Center on Developmental Disabilities at the University of Kansas.

But only about half of families that care for a loved one with disabilities have made plans for the future, and an even smaller portion have revisited those plans to ensure they're up to date, said Meghan Burke, an associate professor of special education at the University of Illinois in Urbana-Champaign.

"Engaging in it once is good, right? But you can't only engage in it once," she said. "It's a living document, because things change, people change, circumstances change."

Burke's research has found several barriers to planning for the future: financial constraints, reluctance to have hard conversations, trouble understanding government services. Creating plans for people with disabilities also is a complex process, with many questions for families to answer: What are their relatives' health needs? What activities do they enjoy? What are their wishes? Where will they live?

ABA Group Opposes 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.

From the  Association for Behavior Analysis International (ABAI):

The Association for Behavior Analysis International (ABAI) and its members respect the personal dignity and worth of every human being and affirm each individual’s right to effective behavioral treatment and to freedom from inappropriate, unnecessary, and/or intrusive interventions. Behavior analytic principles constitute the foundation of the professional practice of applied behavior analysis and are essential to ethically sound and effective treatment programs. In accordance with these values, we strongly oppose the use of contingent electric skin shock (CESS) under any condition.

Our concerns center upon human rights, insufficient evidence demonstrating the efficacy of CESS compared to alternative treatments, a lack of social validity, and consistent cultural considerations being raised by individuals and organizations worldwide. Practices related to the use of CESS have the potential to harm individuals who receive it. The potential for harm is critical to consider when the procedure is applied to vulnerable populations and in a variety of cultural contexts, inside and outside of the United States. We are committed to promoting human rights, creating equitable and safe environments for all individuals, and respecting individual diversity and autonomy of all. As an international membership organization, this position statement is critical and necessary for upholding our commitment to sound ethical practice. This position and rationale are based on a careful review of the relevant evidence, ethical standards, and commentary received regarding the cultural implications, particularly for countries where CESS is illegal.

Limited Supporting Evidence

 

The science of applied behavior analysis has evolved sufficiently to where the current scientific literature base suggests that function-based interventions, as inspired by functional analysis methodology, are effective in treating severe challenging behaviors.

CESS can suppress behavior; however, as a treatment, it does not address the function of a behavior, and does not support the acquisition of prosocial or adaptive behavioral repertoires. In fact, the short- and long-term emotional side effects and likelihood of trauma produced by the procedure may interfere with the acquisition of such repertoires. The published literature based in applied behavior analysis does not support CESS as an evidence-based treatment. There is limited evidence that the treatment produces long-term maintenance of behavior change, promotes generalization of behavior change to naturalistic conditions, or enhances important quality of life outcomes during or after treatment. Moreover, there are limited studies published on CESS in behavior analytic journals, limited replication studies across multiple sites, and limited studies published by leading researchers with expertise in the assessment and treatment of challenging behavior. Finally, relatively few of those studies were methodologically rigorous or published after the year 2000, given that CESS is not a commonly accepted or socially valid practice. In short, behavior analysts must select interventions based on the current scientific literature.

Other concerning aspects with the implementation of CESS include the fact that its intensity must be increased in order for it to be effective, a technology has not yet been established for the effective withdrawal of treatment, the intervention may produce unwanted emotional side effects that jeopardize clients’ well-being, and contingencies may support misuse by staff. In addition, with a delay intervening between the occurrence of a behavior and the delivery of shock, it is likely that prosocial or adaptive behaviors may be punished.

Relevant Ethical Standards

There are many ethical issues germane to the use of CESS. A number of professional organizations have articulated such ethical concerns to the ABAI Executive Council and developed position statements regarding the use of CESS. Members of ABAI are bound to the code of ethics for their respective professional disciplines. Common ethical considerations include the following: Do no harm, minimize risks and maximize benefits, protect the welfare of clients, provide treatment within one’s scope of competence, obtain consent and assent for treatment, and implement practices that are based on scientific evidence. Based on these ethical considerations, it is the position of ABAI that CESS is an ethically questionable practice.

Cultural Implications

ABAI supports the growth of behavior science worldwide and commits to including international members. As an international organization, it is essential for ABAI to consider the impact of behavior analytic interventions for different cultures, both within the United States and internationally. ABAI as an organization bears the responsibility to represent international views and standards.

The field is evolving towards a compassionate application of behavior analysis, one that endorses humane and dignified practices. In addition to supporting effective and scientifically based interventions, ABAI must support interventions that are ethical, compassionate, and do no harm. Ensuring the protection of the most vulnerable, oppressed, and marginalized populations is paramount for behavior analysts. All practices should consider cultural variables (e.g., race, ethnicity, disability, nationality, gender identity/expression, sexual orientation, socioeconomic status), as well as potential privileges and power dynamics. Not considering these factors may contribute to inequitable or unethical interventions or practices.

Representation in Congress

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."  Previous posts have discussed autistic officeholders and political candidates in New York, Georgia, Texas, and Wisconsin.  Yuh-Line Niou narrowly lost a New York primary for a House seat:  she would have been the first openly autistic member of Congress

Taylor Orth at You Gov:

Disability status: The Centers for Disease Control and Prevention estimates that one in four U.S. adults has a disability. Yet data on members of Congress collected in 2022 suggests that only around 5% have a disability — possibly an underestimate since some may not publicly disclose their disability. While neither party reflects Americans in this regard, Democrats are slightly more representative than Republicans: 20 congressional Democrats are estimated to have disclosed a disability compared to 5 congressional Republicans. When asked which party they think is more representative in terms of disability status of elected officials, Americans are twice as likely to say Democrats as they are to say Republicans.

Peer Support

In The Politics of Autism, I write:

Many analyses of autism speak as if it were only a childhood ailment and assume that parents are the main stakeholders. But most children with autism grow up to be adults with autism, and they suffer uniquely high levels of social isolation. Almost 40 percent of youth with an autism spectrum disorder never get together with friends, and 50 percent of never receive phone calls from friends. These figures are higher than for peers with intellectual disability, emotional disturbance, or learning disability. When school ends, many adults with autism have grim prospects. Though evidence is sparse, it seems that most do not find full-time jobs. Compared with other people their age, they have higher rates of depression, anxiety, bipolar disorder, and suicide attempts.

At the Journal of Autism and Developmental Disorders, Lindsay L. Shea and colleagues have an article titled "Autistic-Delivered Peer Support: A Feasibility Study."

A robust and growing evidence base has identified gaps in services and supports available to autistic adolescents and adults (Dudley et al., 2019; Kałużna-Czaplińska et al., 2018; Koffer Miller et al., 2018; Myers et al., 2015; Turcotte et al., 2016). The creation of services to meet the needs of this group is urgent, as the number of autistic youth aging into adulthood is growing (Schott et al., 2021a, 2021b; Shattuck et al., 2012). As autistic youth age, poor outcomes have been observed in multiple areas, including social and community participation, employment, interpersonal relationships, independent living, and overall quality of life (Henninger & Taylor, 2013; Roux et al., 2015; Shattuck et al., 2011, 2012; Sosnowy et al., 2018; Wehman et al., 2014). A recent meta-analysis found that approximately 50% of the autistic adults included in research studies did not achieve independence in those areas (Mason et al., 2021). Unmet needs for services to support social skills, adaptive skills such as self-care, self-acceptance, and other skill areas may result in barriers for autistic individuals to live independently and fully participate in their community (Cage et al., 2017; Henninger & Taylor, 2013; Kanne et al., 2011). Generating new service options to meet the needs of autistic adolescents and adults that can be funded by Medical Assistance, or Medicaid, is especially critical since it is a primary insurer relied upon by this group across the lifespan (Rizzolo et al., 2013; Schott et al., 2021a, 2021b; Semansky et al., 2011b).

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The goal of this paper is to examine areas of feasibility (i.e., demand, practicality, and acceptability; Bowen et al., 2009) of an autistic-delivered peer support program aimed at enhancing self-identified goals for community outcomes among autistic adolescents and adults. The overall goal of the initiative, the Community Autism Peer Specialist (CAPS), is to promote independent living, participation, and social relationships of autistic youth and adults by addressing individual-identified needs and goals. The CAPS initiative involved the development of a first of its kind peer specialist training program designed by and for autistic peers, which we describe briefly, followed by a description of the CAPS program itself that employed some of the trained peer specialists. We examine the level of utilization of the CAPS services and characteristics of those who have participated in the CAPS program, such as age, co-occurring conditions, social functioning, and unmet needs, with a particular interest in assessing whether autistic individuals with more service needs are willing to seek autistic-delivered peer support services. We also demonstrate practicality through self-reported relationships between peer specialists and program participants in agreement on the goals and tasks and development of bond. Moreover, we evaluate acceptability by assessing both participants and peer specialists’ satisfaction with the program. This information is critical to informing future efforts aimed at expanding the availability of similar peer support initiatives for autistic individuals focused on enhancing community outcomes.

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We provide empirical data about the feasibility and acceptability of an autistic-delivered peer support intervention for transition-age youth and adults. Data from 29 participants who were referred to the program suggest that s. Participants were generally highly engaged in the services and reported high levels of satisfaction with most aspects of the program.

The Best Gift

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

Joshua Pitney (aka "JP"), a sophomore at Pepperdine University, made this 11-minute narrative film as part of an internship with Positive Identity.  In the film, a young autistic actor struggles to find his self-confidence.  

JP writes:

I wanted to tell this story because I, too, have had moments where I have struggled with my identity being on the autism spectrum. I have learned to accept myself for who I am and not be ashamed of my autistic traits, like stimming.

My hope is that this story will inspire others on the spectrum, or anyone else who feels different, to love themselves for who they are and embrace their identity.

 

Highly Mobile Students with Disabilities

 

In The Politics of Autism, I write about special education and the Individuals with Disabilities Education Act. II also discuss the day-to-day challenges facing autistic people and their families. 

Kara Arundel at K-12Dive:

• In a letter to state special education leaders focused on the needs of “highly mobile children” the U.S. Office of Special Education and Rehabilitative Services on Thursday said school systems need to provide “timely and expedited evaluations and eligibility determinations” for any of these students suspected of having a disability that impacts their learning. The letter defines highly mobile children as those who are connected with military families, or are migratory, homeless or in the foster care system.
• The 11-page letter, which came in response to concerns from stakeholders, includes resources on response to intervention approaches before an evaluation is complete and the use of comparable special education services for students new to a district.
• Students who move frequently, particularly those with disabilities, can face challenges such as difficulty communicating their needs to an unfamiliar school and district. OSERS said the intent of its letter is to ensure the educational stability of highly mobile students with disabilities.

Antivaxxers and Blood

 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.

Tim Hume at VICE:

Anti-vaxxers are trying to create a new global infrastructure for the supply of unvaccinated blood, driven by conspiracy theories and pseudoscientific beliefs about the dangers of mRNA COVID vaccines.

SafeBlood Donation was founded by a Swiss naturopath, George Della Pietra, who considers global coronavirus vaccination campaigns to be “the crime of the century.”

He and his supporters believe, wrongly, that mRNA coronavirus vaccines “contaminate” the blood and destroy the immune system, and that unvaccinated people will be harmed if they receive transfusions of blood supplied by vaccinated people.


While traditional vaccines use inactivated virus proteins called antigens to stimulate the body's immune system, mRNA vaccines, such as the Pfizer-BioNTech and Moderna COVID vaccines, rely on a new technology that uses the genetic sequence of the antigen to trigger the body into producing antibodies.

The American Red Cross and other major blood collectors say that blood from people who’ve had mRNA COVID vaccines is safe for transfusion, and that while the vaccine is designed to generate an immune response, vaccine components themselves are not actually found within the bloodstream.

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SafeBlood Donation’s campaign reflects a widespread belief among anti-vaxxers that their biological products will take on unprecedented value in an mRNA-vaccinated world. On social media, anti-vax activists have taken to calling themselves “purebloods,” while others speculate that sperm from unvaccinated men could be “the next Bitcoin.”

Shifting from Fixing

 In The Politics of Autism, I discuss the neurodiversity movement and changing attitudes toward disability in general.

Claudia Wallis at Scientific American:

When I began reporting on autism about 15 years ago, therapists would talk about achieving the “optimal outcome” for children on the autism spectrum. What they meant was changing the classic behaviors associated with the condition—suppressing repetitive actions such as hand flapping, drilling young kids to make eye contact, rehearsing speech and social interactions—so that ultimately the children would no longer meet the diagnostic criteria for autism. It was an elusive goal that only a tiny percentage could reach. Today it is widely seen as wrong-minded.

“We’ve moved away from thinking of autism as a condition that needs to be eliminated or fixed to thinking about autism as part of the neurodiversity that exists across humankind,” says Geraldine Dawson, director of the Duke Center for Autism and Brain Development in Durham, N.C. “The question then becomes, How do we best support people who are autistic, and how would you measure improvement if you are conducting clinical trials?” Dawson, along with two colleagues, wrote about this shift in a recent article in JAMA Pediatrics. It reflects a widespread reevaluation of the goals of therapy and metrics for success, driven in part by the self-advocating voices of people on the spectrum. They have fostered a greater appreciation for what society gains from having different kinds of brains contribute to our world, as well as a greater awareness of the negative impacts of insisting that people with autism behave in ways that are unnatural for them.

Autism-Supportive College

In The Politics of Autism, I discuss the growing number of college students on the autism spectrum. 

A release from SUNY Empire State

(SARATOGA SPRINGS, NY– November 7, 2022)

SUNY Empire State has been designated a first-of-its-kind Autism Supportive College by Anderson Center for Autism. The designation signals that SUNY Empire embeds supports into its culture, infrastructure, and planning to create an inclusive environment and improved academic experience for students with autism and other neurodiversities.

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Anderson Center Consulting & Training awarded the designation to SUNY Empire after careful consultation and training with the college’s faculty and staff, as well as review of SUNY Empire’s current practices and organizational structure and development. SUNY Empire has invested approximately $30,000 over the past two years to make the institution more inclusive. Criteria required for the Autism Supportive College designation include:

• Identifying a plan with measurable objectives, opportunities to educate faculty and staff about Autism Spectrum Disorder (ASD), and supports that can be instituted to encourage inclusion and academic success for individuals with ASD.
• Ensuring key faculty and staff are educated about ASD and the common challenges individuals with ASD experience when pursuing higher education.
• Including systems, practices, and procedures that support the inclusion of Autistic and Neurodivergent students in their pursuit of academic, social and career achievement.
• Creating a sustainability plan that includes measured objectives, accountability measures demonstrating success, feedback from students, faculty and staff, and subsequent steps toward a sustained inclusive program.

In 2020, SUNY Empire established its Center for Autism Advocacy: Research, Education, and Supports (CAARES) to better serve autistic and neurodiverse individuals in the classroom, workplace, and beyond. CAARES Director Noor Syed and Assistant Director Lauren Allen have led the charge to deliver community and professional outreach, provide career support for autistic and neurodiverse college students, and conduct research with and in support of neurodiverse individuals through partnerships with people and organizations around the world.

Research suggests that nearly 2% of college students identify as neurodiverse, a term that encompasses the idea that variation in human brain function is normal and that brain function not considered “typical” should not be stigmatized.

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For more information about the designation, visit www.andersoncenterforautism.org/autism-supportive-programs

Doctors and Disabilities

The Politics of Autism discusses health care. People with disabilities such as autism face many problems with the health care system, including the attitudes of medical professionals.

Emma Yasinski at The Atlantic:

Due in part to scant data, information about health care for people with disabilities is limited, according to Tara Lagu, a co-author of both the 2021 and 2022 papers and the director of the Institute for Public Health and Medicine’s Center for Health Services & Outcomes Research at Northwestern University Feinberg School of Medicine. The few studies that have been done suggest that people with disabilities get preventive care less frequently and have worse outcomes than their nondisabled counterparts.

... 

These issues are well known to Lisa Iezzoni, a health-policy researcher at Massachusetts General Hospital and a professor of medicine at Harvard Medical School. Over the past 25 years, Iezzoni has interviewed about 300 people with disabilities for her research into their health-care experiences and outcomes, and she realized that “every single person with a disability tells me their doctors don’t respect them, has erroneous assumptions about them, or is clueless about how to provide care.” In 2016, she decided it was time to talk to doctors. Once the National Institutes of Health funded the work, she and Lagu recruited the 714 physicians that took the survey for the study published in 2021 in Health Affairs.

Not only did many doctors report feeling incapable of properly caring for people with disabilities, but a large majority held the false belief that those patients have a worse quality of life, which could prompt them to offer fewer treatment options.

During the 2021 study, Iezzoni’s team recorded three focus-group discussions with 22 anonymous physicians. Although the open-ended discussions weren’t included in the initial publication, Lagu says she was “completely shocked” by some of the comments. Some doctors in the focus groups welcomed the idea of additional education to help them better care for patients with disabilities, but others said that they were overburdened and that the 15 minutes typically allotted for office visits aren’t enough to provide these patients with proper care. Still others “started to describe that they felt these patients were a burden and that they would discharge patients with disability from their practice,” Lagu says. “We had to write it up.”

...

Indeed, in the focus groups led by Lagu and Iezzoni, some of the doctors revealed that they view the ADA and the people it protects with contempt. One called people with disabilities “an entitled population.” Another said that the ADA works “against physicians.”

CARD Closures

 The Politics of Autism includes an extensive discussion of autism service providers.

Laura Lovett at Behavioral Health Business:

The Centers for Autism and Related Disorders (CARD) is shutting down – or has already halted – operations in 10 states.

Backed by private equity firm Blackstone, CARD is one of the largest autism providers in the U.S. At the end of 2021, CARD was operating in 24 states across the country and had 221 locations. Following these closures, it will operate in 14 states.

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The company was acquired by Blackstone, whose investments also include virtual behavioral health provider Ginger and consumer genomics giant Ancestry.

The decision to pull back in certain markets comes after key CARD leadership changes. In February, Jennifer Webster came on board as CEO to replace Tony Kilgore, who resigned for undisclosed reasons.

CARD is just one of the many autism providers downsizing.

Looking at the autism space overall, investors and ABA providers grew national platforms as quickly as possible to try to gain market share and leverage in payer rate negotiations. Throughout 2022, some of these companies were forced to cut back operations to match economic realities in local employment markets and limited reimbursement increases.