Setback for Teen Vax Legislation in California

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.  

In California, SB 866, as amended, Wiener. Minors: vaccine consent.

Existing law prescribes various circumstances under which a minor may consent to their medical care and treatment without the consent of a parent or guardian. These circumstances include, among others, authorizing a minor 12 years of age or older who may have come into contact with an infectious, contagious, or communicable disease to consent to medical care related to the diagnosis or treatment of the disease, if the disease or condition is one that is required by law or regulation to be reported to the local health officer, or is a related sexually transmitted disease, as may be determined by the State Public Health Officer.

This bill would additionally authorize a minor 12 15 years of age or older to consent to vaccines that meet specified federal agency criteria. The bill would authorize a vaccine provider, as defined, to administer a vaccine pursuant to the bill, but would not authorize the vaccine provider to provide any service that is otherwise outside the vaccine provider’s scope of practice.

Senator Scott Wiener (D-San Francisco) released the following statement:

“We have made the difficult decision not to call up SB 866 for a vote on the Assembly floor. While the votes are very close, we are several votes short of 41, and we don’t see a viable path for those final few votes.

“Sadly, months of harassment and misinformation — including death threats against me and teen advocates — by a small but highly vocal and organized minority of anti-vaxxers have taken their toll. The health of young people will suffer as a result. SB 866 did nothing more than empower young people to protect their own health, even if their parents have been brain-washed by anti-vax propaganda or are abusive or neglectful. With the reemergence of polio and the continued existence of viruses like mumps, the health risks to young people — like paralysis and sterility — are real and can have profound consequences.

“From the bottom of my heart, I want to thank our coalition of students, healthcare providers, and parents who deeply understand the importance of empowering people to keep themselves healthy. In particular, our student activists continually impressed me with their passion, tenacity, and willingness to sustain personal attacks by adult anti-vaxxers who were absolutely cruel toward them and anyone else who believes in science.

“When we first introduced SB 866, it was unclear if the bill would make it out of a single committee. Instead, the bill passed the full Senate and made it all the way to the Assembly floor, coming within just a few votes of passage.

“The anti-vaxxers may have prevailed in this particular fight, but the broader fight for science and health continues. This coalition isn’t going anywhere.”

Acetaminophen

 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.

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:

Inflammatory bowel disease;

Pesticides;

Air pollution and proximity to freeways;

Maternal thyroid issues;

Autoimmune disorders;

Induced labor;

Preterm birth;

Fever;  

Birth by cesarean section;

Anesthesia during cesarean sections;

Maternal and paternal obesity;

Maternal diabetes;

Maternal and paternal age;

Grandparental age;

Maternal post-traumatic stress disorder;

Maternal anorexia;

Smoking during pregnancy;

Cannabis use during pregnancy;

Antidepressant use during pregnancy;

Polycystic ovary syndrome;

Infant opioid withdrawal;

Zinc deficiency;

Sulfate deficiency;

Processed foods;

Maternal occupational exposure to solvents;

Congenital heart disease;

Insufficient placental allopregnanolone.

Estrogen in the womb;

Morning sickness;

Paternal family history;

Parental preterm birth;

Antiseizure meds

Money Follows the Person

In The Politics of Autism, I discuss health care issues and state Medicaid services for people with intellectual and developmental disabilities.

An August 22 release from the Center for Medicare and Medicaid Services:

Today, the U.S. Department of Health and Human Services (HHS), through the Centers for Medicare & Medicaid Services (CMS), awarded approximately $25 million in planning grants to five new states and territories to expand access to home and community-based services (HCBS) through Medicaid’s Money Follows the Person (MFP) demonstration program. With these awards, 41 states and territories across the country will now participate in MFP. The Biden-Harris Administration is committed to ensuring all seniors and people with disabilities receive the care they need, and this investment is the latest action to help people receive care in the setting of their choice and reduce unnecessary reliance on institutional care.

“The Biden-Harris Administration is deeply committed to ensuring everyone is able to get the high-quality care they need – within the comfort of their own home or community,” said HHS Secretary Xavier Becerra. “Today we are expanding access to home and community-based services so even more states and territories are equipped to best serve the millions of seniors and people with disabilities across the country.”

“We’re putting the full weight of this agency behind solutions that can meet people where they are and help get them to where they want to be when it comes to health care,” said CMS Administrator Chiquita Brooks-LaSure. “Money Follows the Person has a proven track record of helping seniors and people with disabilities transition safely from institutional care to their own homes and communities. Letting ‘money follow the person’ is key to those successes, and to the Biden-Harris Administration’s commitment to affordable, accessible, person-centered care.”

Awards of up to $5 million are being announced for Illinois, Kansas, and New Hampshire, as well as for American Samoa and Puerto Rico – the first time MFP grants have been made available to territories. These awards will support the early planning phase for their MFP programs. This includes: Establishing partnerships with community stakeholders, including those representing diverse and underserved populations, Tribal entities and governments, key state and local agencies (such as state and local public housing authorities), and community-based organizations;
Conducting system assessments to better understand how HCBS support local residents;
Developing community transition programs;
Establishing or enhancing Medicaid HCBS quality improvement programs; and
Recruiting HCBS providers as well as expert providers for transition coordination and technical assistance.

A new report from CMS also describes how MFP has helped facilitate more than 107,000 transitions out of institutional settings since 2008. It also indicates that, thanks in part to programs like MFP, more than 85% of people who used Medicaid long-term services and supports in 2019 received HCBS rather than institutional services. First authorized in 2006, MFP has provided states with more than $4 billion to support people who choose to transition out of institutions and back into their homes and communities.

Supporting HCBS is a critical part of the Biden-Harris Administration’s commitment to helping older adults and individuals with disabilities live safely and independently in their homes and communities. Medicaid is the primary funder of HCBS nationally, and plays a critical role in supporting states’ efforts to strengthen these services for their beneficiaries. Through the American Rescue Plan, President Biden temporarily increased Medicaid funding for HCBS, and every state elected to participate in this program has submitted a detailed plan for how they will use these funds. The administration estimates that this change will ultimately result in $25 billion in increased funding, allowing states to develop innovative ways to address existing HCBS workforce and structural issues, expand the capacity of critical services, and begin to meet the needs of people with disabilities, family caregivers, and providers. In June 2022, HHS notified states that they now have an additional year – through March 31, 2025 – to use this critical funding made available by the American Rescue Plan.

For more information on MFP, visit Medicaid.gov.

"Weaponized Autism"

 In The Politics of Autism, I discuss the issue's role in campaign politics.   In the 2016 campaign, a number of posts discussed Trump's bad record on disability issues more generally.   As his actions as president indicate, he has little use for Americans with disabilities. Nevertheless, some pro-Trump extremists think that they can mobilize autistic people to support him.

Christie Welch and colleagues have an article at The Journal of Autism and Developmental Disorders titled"  Understanding the Use of the Term “Weaponized Autism” in An Alt-Right Social Media Platform."

Abstract

Background

The term “weaponized autism” is frequently used on extremist platforms. To better understand this, we conducted a discourse analysis of posts on Gab, an alt-right social media platform.

Methods

We analyzed 711 posts spanning 2018–2019 and filtered for variations on the term “weaponized autism”.

Results

This term is used mainly by non-autistic Gab users. It refers to exploitation of perceived talents and vulnerabilities of “Weaponized autists”, described as all-powerful masters-of-technology who are devoid of social skills.

Conclusions

The term “weaponized autism” is simultaneously glorified and derogatory. For some autistic people, the partial acceptance offered within this community may be preferable to lack of acceptance offered in society, which speaks to improving societal acceptance as a prevention effort.

From the article:

While not well studied or documented in academic literature (our search of available literature uncovered only one source exploring this - see Lovett (2019) for an exploration of alt-right recruitment tactics), journalistic reports have indicated that hate groups are working online to actively seek and engage autistic people for recruitment (Borrell, 2020; DEO, 2017; Schroeder 2019). Autism advocacy groups and community service organizations have begun to voice similar concerns and are calling for an organized response that is based on evidence and informed by autistic people (Autism Against Fascism, (no date); Braune 2020).

...

For these posters, autism is a readily exploitable resource that can be channelled in pursuit of their agenda, and especially as a means for lashing out at those who are considered “the enemy.” Indeed, Gab posters within our data discuss how autistic people can be deployed to advance the interests of the alt-right. The comments reveal a sometimes implicit, other times explicit assumption that autistic people are ripe for manipulation.

The greatest weapon on Earth is the weaponization of the depressed and emotionally vulnerable. Is Weaponized Autism not a piratical suicide delivery device? Can Social Media be used to find and manipulate useful idiots? Sadly yes

Back in the day (2016) we on the very hard right, the white nationalist alt-right, used these people as a force multiplier because at the time we desperately needed their weaponized autism to elect Trump.

 

Making Federally Funded Research Freely Available

In The Politics of Autism, I describe the difficulties of finding reliable information:

One problem is that a good deal of the solid research about autism lies in academic journals behind an Internet paywall, open only to people who have a university library card or can afford the journals’ exorbitant prices ($35 or more per article). Says neuroscientist Sophia Colamarino: “In today’s information age, where essentially anything said by anyone can be made accessible within a matter of moments, it is unfortunate that families have easy access to all BUT the most scientifically valid information, that which can be found in scientifically reviewed research literature.” NIH and Autism Speaks have tried to remedy this situation by requiring its research grant recipients to put any resulting peer-reviewed research papers on the PubMed Central online archive, but this policy affects only a fraction of the literature on autism.

An August 25 release from the White House:

Today, the White House Office of Science and Technology Policy (OSTP) updated U.S. policy guidance to make the results of taxpayer-supported research immediately available to the American public at no cost. In a memorandum to federal departments and agencies, Dr. Alondra Nelson, the head of OSTP, delivered guidance for agencies to update their public access policies as soon as possible to make publications and research funded by taxpayers publicly accessible, without an embargo or cost. All agencies will fully implement updated policies, including ending the optional 12-month embargo, no later than December 31, 2025.

This policy will likely yield significant benefits on a number of key priorities for the American people, from environmental justice to cancer breakthroughs, and from game-changing clean energy technologies to protecting civil liberties in an automated world.

For years, President Biden has been committed to delivering policy based on the best available science, and to working to ensure the American people have access to the findings of that research. “Right now, you work for years to come up with a significant breakthrough, and if you do, you get to publish a paper in one of the top journals,” said then-Vice President Biden in remarks to the American Association for Cancer Research in 2016. “For anyone to get access to that publication, they have to pay hundreds, or even thousands, of dollars to subscribe to a single journal. And here’s the kicker — the journal owns the data for a year. The taxpayers fund $5 billion a year in cancer research every year, but once it’s published, nearly all of that taxpayer-funded research sits behind walls. Tell me how this is moving the process along more rapidly.” The new public access guidance was developed with the input of multiple federal agencies over the course of this year, to enable progress on a number of Biden-Harris Administration priorities.

“When research is widely available to other researchers and the public, it can save lives, provide policymakers with the tools to make critical decisions, and drive more equitable outcomes across every sector of society,” said Dr. Alondra Nelson, head of OSTP. “The American people fund tens of billions of dollars of cutting-edge research annually. There should be no delay or barrier between the American public and the returns on their investments in research.”

This policy update builds on the Biden-Harris Administration’s broader efforts to broaden the potential of the American innovation ecosystem by leveling the playing field for all American innovators, which can help ensure that the U.S. remains a world leader in science and technology. This policy guidance will end the current optional embargo that allows scientific publishers to put taxpayer-funded research behind a subscription-based paywall – which may block access for innovators for whom the paywall is a barrier, even barring scientists and their academic institutions from access to their own research findings. In addition, agencies will develop plans to improve transparency, including clearly disclosing authorship, funding, affiliations, and the development status of federally funded research – and will coordinate with OSTP to help ensure equitable delivery of federally funded research results and data.

Advocates, researchers, academic libraries, Congressional leaders, and others have long called for greater public access to federally funded research results. This policy update reflects extensive public engagement with stakeholders across the research publication ecosystem on ways to strengthen equitable access to federally funded research results. OSTP’s consultations have included large and small science and academic publishers, for-profit and not-for-profit organizations, libraries and universities, scholarly societies, and members of the general public.

In the short-term, agencies will work with OSTP to update their public access and data sharing plans by mid-2023. OSTP expects all agencies to have updated public access policies fully implemented by the end of 2025. This timeline gives agencies, researchers, publishers, and scholarly societies some flexibility on when to adapt to the new policies. Over the long term, OSTP will continue to coordinate with federal agencies to ensure that government public access policies adapt to new technologies and emerging needs.

Antivax Kook Running for Minnesota Governor

 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.

Unfortunately, Republican politicians and conservative media figures are increasingly joining up with the anti-vaxxers.   Even before COVID, they were fighting vaccine mandates and other public health measures.

 Andrew Lapin at JTA:

When the Minnesota GOP’s nominee for governor invoked Kristallnacht and Hitler at a recent anti-mask mandate rally, it was a by-now familiar scene: a public figure comparing life under COVID-19 restrictions to the days of Nazi rule.

But on Tuesday, former State Sen. Scott Jensen did something unusual: he doubled down.

“I want to speak to a little bit of a hubbub that’s been in the media lately about whether or not I was insensitive in regards to the Holocaust. I don’t believe I was,” Jensen said in a Facebook video. “When I make a comparison that says that I saw government policies intruding on American freedoms incrementally, one piece at a time, and compare that to what happened in the 1930s, I think it’s a legitimate comparison.”

It was a markedly different approach to a cycle that has continued on repeat since the initial COVID outbreak in 2020: A public figure declaring that mask mandates and lockdown measures, usually instituted by Democrats, have something in common with Nazi policies, before reversing course following pressure from Jewish groups and Holocaust memorial organizations. That was the case with Ohio Rep. Warren Davidson; New York City Councilwoman Vickie Paladino; antivax activist Robert Kennedy Jr.; and others.

But unlike those other figures, Jensen stood by his words, saying, “It may not strike your fancy — that’s fine. But this is how I think, and you don’t get to be my thought police person.”

Jensen, who received more than 90% of the Republican vote in Minnesota’s Aug. 9 primary, was responding to a recording of him at an anti-mask rally in the state in April, where he said that Democratic Gov. Tim Walz’s COVID policies were comparable to Kristallnacht, the “night of broken glass” that heralded the beginning of the Nazis’ antisemitic mass violence.

“If you look at the 1930s and you look at it carefully, we could see some things happening, little things, that people chose to push aside — ‘It’s going to be okay. And then the little things grew into something bigger,’” Jensen said at the rally, in a speech captured on video. “Then there was a night called Kristallnacht — the night of the breaking glass.

“Then there was the book burning, and it kept growing and growing, and a guy named Hitler kept growing in power, and World War II came about. Well, in a way, I think that’s why you’re here today. You sense that something’s happening, and it’s growing little by little.”

The rally was sponsored by Mask Off Minnesota, a group that spreads COVID-19 misinformation. Jensen, a licensed physician, is himself unvaccinated and has made public comments in which he has questioned the efficacy of COVID vaccines and other pandemic policies.

Polio Redux

 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.

 Ari Daniel at NPR:

Polio is the disease most people thought we had put behind us here in the United States. But earlier this summer, an individual in Rockland County, N.Y., contracted the virus likely from exposure in this country, and ended up paralyzed.

The last time there was community transmission of polio in the U.S. was 1979. The Americas were declared polio free in 1994. Though it's just one case of paralysis at the moment, public health officials — both locally and nationally — are taking the news very seriously.

Wastewater testing and genetic sequencing have shown the virus has been quietly circulating in a couple New York counties since at least May. And it recently was detected in New York City's wastewater. "Even a single case of paralytic polio represents a public health emergency in the United States," the Centers for Disease Control and Prevention declared in a recent report.

Low vaccination rates in Rockland county mean there's a risk of more paralytic cases in that community, the report said. The challenges that health officials are facing while managing the local response in New York may indicate where other spots in the country could soon be headed.

ABA and Private Equity

The Politics of Autism includes an extensive discussion of autism service providers. Since the book's publication, a big change has consisted of a massive increase in private equity investments.

Tara Bannow at STAT:

ABA has long been viewed as the gold standard for kids with autism, so much so that every state mandates insurance coverage. For some families, it is the only option that insurance will cover at all.

But like other pockets of the health care industry, this one has been transformed over the past decade by a flood of investments from private equity firms, drawn by the promise of insurance reimbursement and the rising rate of autism in children across the U.S., now estimated at 1 in 44 kids.

Families and clinicians who once believed fully in the promise of ABA say the financial investors’ fixation on profit has degraded the quality of services kids receive, turning it into the equivalent of fast food therapy. They’ve grown disillusioned with the industry, they told STAT. Some are now questioning whether the therapy is helpful at all, or even harmful, especially after a recent Fortune article detailed an allegation of physical abuse at one chain.

...

But several people working in the industry say that private equity, in an effort to save money on time-intensive assessments, often uses “cookie cutter” treatment plans that are at times simply copy-pasted from one client to the next, which they said runs counter to how the therapy is intended to work.

...'

One board-certified behavior analyst — the master’s-level clinicians who supervise ABA technicians — said she was shocked when she started working at Autism Learning Partners in Texas. It was very different from her experience running a small, independent ABA firm there that shut down during the pandemic. She said she felt like a “billing machine, trying to make as much money for private equity as possible.”

Yuh-Line Niou on Autistic Voices

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.

At the 19th, Sara Luterman interviews New York State Assemblymember Yuh-Line Niou, who is running to represent New York’s 10th District in the House.  She would be its first openly autistic member.

Is there anything about your experience as an autistic person that has informed your policy?

I’ve been shaped by being autistic. I have had to fight to carve out space for myself and others, from a young age, to get a seat at the table. I think that the disabled and neurodiverse communities have been left out of the conversation and policymaking process for a very, very long time. Even when we have people making considerations for us, it’s really different than doing it ourselves.

I think because I’ve had to struggle a little to make sure my needs are being met, I understand better that we should be fighting for something different. That’s why representation matters. That’s why we need to send people with diverse backgrounds to every different leadership role available. That way we can bring our lived experiences to the legislative process. The world we live in is often dominated by hate and exclusion. The only way that we can fight back against that is to be at every level of government. We need to become more visible to ensure our voices are heard.

Closures and Waiting Lists

In The Politics of Autism, I discuss state services for people with intellectual and developmental disabilities.

 Dan Goldberg at Politico:

Private agencies that provide services for the intellectually and developmentally disabled have long warned that, without fresh state and federal funding, they would be unable to provide housing and staff support to the growing number of Americans who need care.

Over the last 12 months, the Covid-19 pandemic’s lingering effects and once-in-a-generation inflation have turned dire predictions into sobering truths, and agency directors, who for years hobbled along on shoestring budgets, have done in 2022 what not long ago would have been unthinkable: closed their doors.

...

Across the country, more than three-quarters of providers said they’ve turned away referrals, and more than half have discontinued programs, according to a survey from the American Network of Community Options and Resources, an advocacy group.

What happens to the residents? They live with siblings or their elderly parents, some who are themselves in need of care, or they become wards of the state, sent to live in larger and larger facilities, the kind of institutionalized settings the country swore off nearly 50 years ago.

...
Most agencies rely on state and federal Medicaid money to pay employees and can’t increase salaries to compete with the retail or food-services industries because Medicaid rates are set by the state. Though that’s always been a challenge, it’s exacerbated during periods of high inflation when wages in other sectors rise and the cost of living increases, making it that much more tempting for employees to take a new job that pays a couple dollars more an hour.

...

Turnover rates have climbed to nearly 50 percent nationally, meaning half of all employees need to be replaced every year, a huge expense in time and training.

...

Most states were helped by last year’s American Rescue Plan, which temporarily boosted federal matching funds for home- and community-based services. Many providers used the bump to supplement wages or offer pandemic signing bonuses, but that money was never intended to be a permanent fix.

“We’ve offered bonuses, but [employees] know that’s not permanent,” Wilush said. “When Target goes to $24 an hour, it’s really hard to compete with that.”

The Biden administration sought to shore up those programs, proposing $400 billion in new money for home- and community-based services in the Democrats’ social spending package. House Democrats put about $150 billion in their version that passed last year — but it was not included in the reconciliation package that the Senate passed this week, meaning it is unlikely providers will see new money any time soon.

Rep. Maloney Regrets Antivax Past

In The Politics of Autism, I discuss the discredited theory that vaccines cause autism. 

In the past, Rep. Carolyn Maloney embraced that notion, though she later changed her position.

Daniel Marans at Huff Post:

Rep. Carolyn Maloney (D-N.Y.), who is locked in a contentious primary in Manhattan, expressed “regret” for voicing concerns in the past about the potential health effects of childhood vaccines.

In a heated interview on Gotham Gazette reporter Ben Max’s podcast that came out on Monday, Maloney initially defended her record by pointing to her work helping fund COVID-19 vaccine distribution.

“I am vaccinated. My children are vaccinated,” Maloney said. “I have brought millions of vaccines ― over $5 billion ― to the city of New York to support the establishment of vaccines. And I would say that my record is a good one in supporting vaccines.”

But when pressed on her statements about a supposed link between vaccines and autism, as well as legislation she introduced years ago to study the health effects of vaccines, Maloney said she wished she had never said anything to question vaccine safety.

“I regret any statement I ever made asking a question about vaccines,” she said. “There were two bills that I co-sponsored that studied them. I regret asking to study vaccines.”

When asked if Maloney’s campaign wanted to offer any clarification, a campaign spokesperson said her remarks were consistent with what she has said in the past.

The comments nonetheless appear to mark the first time that Maloney has expressed regret of any kind about her past dabbling in vaccine skepticism, and her associations with prominent vaccine skeptics.

Improved College Access in Massachuetts

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

A July 28 release from Massachusetts Advocates for Children:

Thank you for your advocacy, your voices were heard! After almost a decade of advocacy, Governor Baker signed the higher education bill which provides inclusive educational opportunities for individuals with Intellectual Disabilities and Autism at state colleges and universities. Young adults with disabilities can now be lifelong learners with their peers!

Many thanks to Gov. Baker, Senate Ways and Means Chair Rodrigues, House Ways and Means Chair Michlewitz, Senate President Spilka, Speaker Mariano, lead sponsors Representative Garballey and Senator Lovely, Joint Committee on Higher Education Co-Chairs Senator Gobi and Representative Rogers, and many other important lawmakers.

This law includes provisions that remove barriers precluding persons with Intellectual Disabilities (ID) and Autism from participating in state colleges and universities. Individuals with ID and autism who cannot pass MCAS [Massachusetts Comprehensive Assessment System] and who do not obtain a regular high school diploma can participate as non-matriculating students in courses with their nondisabled peers and participate in extracurricular activities and other aspects of campus life, with supports and services necessary to facilitate inclusion.

The law also ensures state colleges and universities establish guidelines governing selection of individuals with ID and Autism as well as course selection. Supports and services to facilitate inclusion can be provided by the local school district, the Massachusetts Rehabilitation Commission, Department of Developmental Services, or private funding. The law also codifies the MAICEI grant program and allows the special education IEP Team to consider higher education as an option for students with disabilities.

Download the entire document here

View the new law here

Psychiatry Training

The Politics of Autism discusses health care, and explains that autism services can be complicated, creating difficulties for autistic people and their families.  Sometimes medical professionals lack sufficient training in ASD.

 Natasha Marrus and colleagues have an article at Autism titled "Psychiatry training in autism spectrum disorder and intellectual disability: Ongoing gaps and emerging opportunities."  The abstract:

Autism spectrum disorder and intellectual disability are associated with psychiatric comorbidities, yet a 2009 study of US child and adolescent psychiatry program directors indicated that psychiatry residents receive insufficient training in autism spectrum disorder/intellectual disability. This follow-up study surveyed child and adolescent psychiatry and general psychiatry program directors to assess (1) the current extent of residency training in autism spectrum disorder/ intellectual disability, (2) program director perceptions of educational topics and resident competency in autism spectrum disorder/intellectual disability, and (3) preferred resources to strengthen autism spectrum disorder/intellectual disability training. As in 2009, many child and adolescent psychiatry program directors reported few lecture hours, although current child and adolescent psychiatry residents saw slightly more patients with autism spectrum disorder but not intellectual disability. General psychiatry program directors reported fewer lecture hours in autism spectrum disorder/ intellectual disability and fewer patients with autism spectrum disorder than child and adolescent psychiatry program directors. Both child and adolescent psychiatry and general psychiatry program directors recognized the importance of a range of educational topics in autism spectrum disorder/intellectual disability. Child and adolescent psychiatry program directors reported higher resident competency, and lecture hours and patients seen moderately correlated with resident competency. Program directors indicated that online videos and other resources would help improve autism spectrum disorder/intellectual disability training in their programs. Collectively, these findings suggest minimal improvements in autism spectrum disorder/intellectual disability training over the past decade and highlight the urgent need to advance psychiatry training in this field through dissemination of resources.

From the article:

Notably, literature from other countries demonstrates that insufficient training of psychiatrists in the care of patients with ASD/ID is a global concern, particularly given a pervasive shortage of psychiatrists, with many low-income and middle-income countries having one psychiatrist for every 200,000 people (World Health Organization [WHO], 2013). Recent reviews of training standards in ID for psychiatrists in the European Union (Dias et al., 2020) and overall psychiatry training in Asia (Isaac et al., 2018) have identified multiple training deficits, including wide variance in the rigor and availability of training, with no required ID training in some countries, a lack of unified minimum training standards, a mismatch between the prevalence of a condition and the amount of training, and limited trainee supervision. These disparities were noted to compromise the quality of psychiatric care by contributing to inconsistent and fragmentary treatment across the lifespan. In countries throughout North America, Europe, and Asia, as well as Australia, training deficits have been corroborated by psychiatrists themselves (Edwards et al., 2007; Kaushal et al., 2018; Lunsky et al., 2007; Sajith et al., 2019; Werner et al., 2013), and systemlevel challenges entailing early identification of these patients and the availability of educational resources have also been reported in Brazil and South Africa (Adnams, 2010; Bordini et al., 2015).

 

Underserved Communities and Autism

In The Politics of Autism, I write about the experiences of different economic, ethnic and racial groups.   Inequality is a big part of the story. 

At CNN, Kathleen Toner reports on Illinois autism mom Debra Vines:

“My whole life revolved around finding services for Jason. To be able to get any type of assistance I had to take a train, plane, bus, and a magic carpet to get there,” she said. “Multiple cocktails of medication, changing doctors, changing hospitals. And most of it I did alone because my husband worked nights. I felt totally helpless.”

The support groups that she did find were in affluent communities. Not only was it hard for her to get to without a car, but when she did arrive, she felt out of place.

“I was the only Black woman there, I was the only person that had low income,” she said. “The women – they were great. They were giving me resources. But they would say, ‘They only cost $500.’ And I’m trying to figure how I’m going to get groceries for next week. Imagine how I felt then – even more helpless.”

...

In 2007, Vines and her late husband, James Harlan, created The Answer Inc., a nonprofit that supports families in underserved communities who’ve been impacted by autism. To date, Vines says the group has provided programming and guidance to more than 4,000 families in the Chicago area.

“Families are always asking questions, and we want to provide the answers,” she said. “I would say 95% of everything that we provide is a blueprint of what I was missing as a parent.”

Many of those who Vines supports are from Black and Brown communities – a demographic known to face hurdles in the diagnosis and treatment of autism. The CDC reports that Black and Hispanic children are less likely to be identified with the condition, and researchers at Boston University found that Black children are five times less likely to receive early intervention services than white children – due in part to racial bias and cultural stigma.