Maternal Cannabis Use

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

Abay Woday Tadesse, Getinet Ayano, Berihun Assefa Dachew, Kim Betts, Rosa Alati, Exposure to maternal cannabis use disorder and risk of autism spectrum disorder in offspring: A data linkage cohort study, Psychiatry Research, Volume 337, 2024, 115971, ISSN 0165-1781,https://doi.org/10.1016/j.psychres.2024.115971 .(https://www.sciencedirect.com/science/article/pii/S0165178124002567)

This study aimed to investigate the association between pre-pregnancy, prenatal and perinatal exposures to cannabis use disorder (CUD) and the risk of autism spectrum disoder (ASD) in offspring. Data were drawn from the New South Wales (NSW) Perinatal Data Collection (PDC), population-based, linked administrative health data encompassing all-live birth cohort from January 2003 to December 2005. This study involved 222 534 mother-offspring pairs. . The exposure variable (CUD) and the outcome of interest (ASD) were identified using the 10th international disease classification criteria, Australian Modified (ICD-10-AM). We found a three-fold increased risk of ASD in the offspring of mothers with maternal CUD compared to non-exposed offspring. In our sensitivity analyses, male offspring have a higher risk of ASD associated with maternal CUD than their female counterparts. In conclusion, exposure to maternal CUD is linked to a higher risk of ASD in offspring, with a stronger risk in male offspring. Further research is needed to understand these gender-specific effects and the relationship between maternal CUD and ASD risk in children.

This study fits #18 in the very long. growing, and probably incomplete list of other correlates, risk factors, and possible causes that have been the subject of serious studies: 

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

The Fight Over "Profound Autism"

 In The Politics of Autism, I write:

The most basic questions trigger angry arguments. For instance, into what category do we put autism in the first place? In 2013, President Obama said that “we’re still unable to cure diseases like Alzheimer's or autism or fully reverse the effects of a stroke.” The language of “disease” and “cure” offends some in the autism community. “We don’t view autism as a disease to be cured and we don’t think we need fixing,” says Ari Ne’eman of the Autistic Self-Advocacy Network. “We do feel comfortable with the word disability because we understand what it means.” From this perspective, autism is difference that requires accommodation, not an illness that requires eradication. Adherents of this position liken autism to homosexuality, which psychiatrists once deemed to be a  disorder. Conversely, some parents take offense at opposition to a cure. “Anyone with the mental and verbal ability to challenge autism research is not autistic on a scale that I care to recognize,” writes autism parent James Terminello. “Opposition to finding a cure is particularly hurtful to parents who still mourn the loss of the child that could have been. A line has been crossed.”

Whitney Ellenby at Boston Globe:

Intolerance for the term “profound autism” is leaching into medical journals and doctors’ practices. Doctors who’ve devoted their careers to treating children who compulsively ravage their flesh and slam their skulls into the ground are now verbally castrated on social media and “canceled” from lectures so regularly that preserving their livelihood requires stifling crucial medical data. It’s become common for autism self-advocates to “shout down” researchers imparting medical data at conferences or to call the researchers out on social media for online hazing and threats by neurodiverse mobs.

Today, both experienced and newer autism researchers contemplate leaving the field because, as one University of California scientist, David Amaral, observed, “People are getting reluctant to give public presentations or to be too vocal about what they’re finding,” despite the fact that “science is supposed to be about communication.” Top research institutions like the National Institutes of Health (NIH), tasked with conducting clinical trials to illuminate the disorder, face vitriolic accusations of being “ableist” and uncomprehending of the very people they are trying to help.

After the The Lancet’s commission recognized “profound autism” in 2021, the journal published an article by a doctor who wrote: “Generally, physicians think that disability is medical, and that if a patient’s condition interferes with their daily life, they are disabled. This traditional, medical model of disability does not address societal factors that influence disability, nor does it recognize disability as a cultural identity. Viewing disability as an issue stemming from an impaired body can encourage physicians to view disabled patients’ quality of life negatively . . . and to offer treatments aiming to fix the patient.”

This is absurd. I know of no person with profound autism who proudly identifies self-mutilating or violent impulses as core to their “cultural” identity. There is nothing bigoted about striving to ameliorate dangerous behaviors.

Fluoride

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

Karen Kaplan at LAT:

Adding fluoride to drinking water is widely considered a triumph of public health. The Centers for Disease Control and Prevention says the cavity-prevention strategy ranks alongside the development of vaccines and the recognition of tobacco’s dangers as signal achievements of the 20th century.

But new evidence from Los Angeles mothers and their preschool-age children suggests community water fluoridation may have a downside.

A study published Monday in JAMA Network Open links prenatal exposure to the mineral with an increased risk of neurobehavioral problems at age 3, including symptoms that characterize autism spectrum disorder. The association was seen among women who consumed fluoride in amounts that are considered typical in Los Angeles and across the country.

The findings do not show that drinking fluoridated water causes autism or any other behavioral conditions. Nor is it clear whether the relationship between fluoride exposure and the problems seen in the L.A.-area children — a cohort that is predominantly low-income and 80% Latino — would extend to other demographic groups.

There is a very long. growing, and probably incomplete list of other correlates, risk factors, and possible causes that have been the subject of serious studies: 

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

The Cruelty of the Antivaxxers

In The Politics of Autism, I analyze the discredited notion that vaccines cause autism. This bogus idea can hurt people by allowing diseases to spread.   And among those diseases could be COVID-19.

Antivaxxers are sometimes violent, often abusive, and always wrong. A leading anti-vaxxer is presidential candidate Robert F. Kennedy, Jr.  He has repeatedly compared vaccine mandates to the Holocaust.  Rolling Stone and Salon retracted an RFK article linking vaccines to autism.

He is now running for president as an independent.

Catherine Tan at CNN:

What many do not understand is that for a significant number parents of children with autism, anti-vaccination beliefs carry the pernicious and agonizing false hope of a cure. Blaming vaccines for a child’s autism is cruel and misleading, and preys on parents and families at their most vulnerable. Currently, there is no medical “cure” for the core symptoms of autism. Children with autism typically receive behavior and educational interventions for skill development.

...

Behind the vaccine-autism myth is a multimillion-dollar industry dedicated to reversing autism. The autism recovery industry is populated by a number of entrepreneurs and businesses, but most common are specialized laboratories, compounding pharmacies and purveyors of experimental treatments.

The majority of these experimental treatments lack scientific support and, in some cases, are incredibly harmful as well as wildly expensive. During my study, I observed parents of children with autism experimenting with parasite therapy to address inflammation, hormone therapy to delay puberty, and even stem cell therapies in Mexico and India.

...

We cannot afford to think of RFK Jr.’s campaign as just a possible election spoiler. Kennedy and Shanahan are sowers of misinformation and the lasting damage they may have on vaccine trust should not be underestimated. As a researcher and an educator, it is my hope that enhanced public scrutiny will help reveal how this movement is based on debunked research, lies and delusions.

Trump v. RFK Jr. on Vaccines

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. A leading anti-vaxxer is presidential candidate Robert F. Kennedy, Jr.  He has repeatedly compared vaccine mandates to the Holocaust.  Rolling Stone and Salon retracted an RFK article linking vaccines to autism.

He is now running for president as an independent.

Chris Brennan at USA Today:

Speaking Saturday at a National Rifle Association convention in Dallas, Trump warned the crowd against backing Kennedy, calling him a member of the "radical left" while noting that the independent candidate has at times walked back his criticism of vaccines.

"Don't think about it. Don't waste your vote," Trump told the NRA. "Somebody said, well, they like his policy on vaccines. The other day he said, 'No, no, he'll go for the vaccine.' He's got no policy on anything."

Trump, in a May 9 video posted to his social media site Truth Social, also went after Kennedy for maybe not being so anti-vaccine after all.

"He said it on a television show that vaccines are fine, and he's all for them," Trump said in his video. "And for those of you that want to vote (for Kennedy) because you think he's anti-vaccine, he's not really an anti-vaxxer."

Trump appeared to be describing an April interview Kennedy did on HBO's "Real Time with Bill Maher," where Kennedy was pushed on his vaccine misinformation and said, "I believe if people want the vaccine that they should be able to get it. I'm not anti-vaccine."

...

New numbers from Siena College, The New York Times and The Philadelphia Inquirer last week showed Kennedy drawing a similar number of votes from Biden and Trump.

...

Trump now campaigns for another term as president by vowing to deny federal funding for any school with a vaccine mandate, as he did Saturday in his NRA speech. This "I will not give one penny" pledge is a standard part of his campaign rally speech.

That line usually draws cheers. And it puts Trump's ignorance on full display for crowds that really seem to dig it.

Dishonest RFK Jr. Video

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. A leading anti-vaxxer is presidential candidate Robert F. Kennedy, Jr.  He has repeatedly compared vaccine mandates to the Holocaust.  Rolling Stone and Salon retracted an RFK article linking vaccines to autism.

He is now running for president as an independent.

Kate Yandell at FactCheck.org:

A recent video promoting independent presidential candidate Robert F. Kennedy Jr. promises to “start with some irrefutable facts.” The over 30-minute video, narrated by actor Woody Harrelson, begins with some biographical truths about the candidate, but veers into promoting various debunked or unsupported narratives about vaccines.

...

According to the video, a pivotal moment in Kennedy’s career came when he met parents who believed that mercury in vaccines had harmed their children. The video doesn’t explicitly state how the parents believed the vaccines had injured their children, but Kennedy has said in the past mothers of autistic children brought the issue to his attention. A wide range of evidence indicates that there’s no link between thimerosal — a mercury-containing preservative — and autism or other conditions.

However, one parent provided Kennedy with scientific studies that convinced him, in his words, that “I got to drop everything and do something about this.” This led Kennedy to publish a 2005 article for Salon and Rolling Stone, which advanced the unsupported idea that thimerosal had caused an increase in autism and other disorders. Salon eventually retracted the story.

The Kennedy video doesn’t mention that extensive research has failed to show any relationship between thimerosal in childhood vaccines and neurodevelopmental disorders. In fact, the rate of autism continued to rise after thimerosal was removed from childhood vaccines in 2001, indicating that it did not explain the increase in diagnoses of the condition. This increase was likely caused in large part by growing awareness of autism, changes to how it is defined and the growing availability of services for children who get the diagnosis.

For more, read “What RFK Jr. Gets Wrong About Autism.”

Parents of Autistic Adults

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

Marsack-Topolewski, C.N., Samuel, P.S. Experiences of Parental Caregivers of Adults with Autism in Navigating the World of Employment. J Autism Dev Disord (2024). https://doi.org/10.1007/s10803-024-06381-8  Abstract:

Purposeparticularly for parent particularly for parents of loved ones with disabilities or health challenges, who need and/or want to be employed. This study describes the employment experiences of aging parents as they continue to balance engagement in the paid workforce with the ongoing provision of care for their adult children with autism spectrum disorder (ASD). The purpose of this study was to examine the lived experiences of parents of adult children with ASD in the context of balancing career and caregiving responsibilities.

Methods

The current study uses a qualitative phenomenological research approach to describe the lived experiences of 51 parents who were caring for an adult child with ASD. The parents participated in telephone interviews to obtain information about their career experiences while providing care and support to their adult children with ASD.

Results

Three caregiving themes emerged including: (a) difficulty balancing caregiving with work responsibilities, (b) reasons for working, not working, or working intermittently, and (c) work as an escape or wanting to work more.

Conclusion

As more individuals with ASD reach adulthood, often relying to varying extents on their families for daily support, parental employment will continue to be impacted as they juggle their career with caregiving responsibilities. Economically, one or more family members typically need to work to sustain the family’s needs and employment support should be considered. As a society, families often need to make choices even with an adult child with ASD of who will work, how, and when.

Autism CARES 2024

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

From Autism Speaks:

Today, the U.S. House Energy and Commerce Committee’s Subcommittee on Health reviewed 23 bills, including the Autism Collaboration, Accountability, Research, Education, and Support (CARES) Act of 2024 (H.R. 7213). We are grateful to Chair Guthrie, Ranking Member Eshoo, Chair McMorris Rodgers, and Ranking Member Pallone for convening this meeting and recognizing the urgent need to invest in autism research and training programs to ensure better care and well-being for autistic people. As a result of today’s markup, the Autism CARES Act of 2024 has been amended to include changes, many of which were suggested by Autism Speaks and colleague organizations, that not only sustain support for existing federal autism programs but also expand efforts and address challenges for currently underserved portions of the autism population.

As the most comprehensive federal law addressing the urgent needs of the autism community, the Autism CARES Act of 2024 includes over $2 billion in authorized federal spending on autism research and training programs for the next five years. Autism Speaks has led efforts, and worked in coalition with other organizations, to ensure that the federal programs that exist due to this law continue to expand and evolve to meet the diverse needs of the entire autism community. After countless meetings with our congressional champions, collaboration with other stakeholders and organizations, and meetings held by 100+ advocates during our Advocacy Forum & Hill Day, we are proud to celebrate this milestone in not only advancing the Autism CARES Act of 2024 but expanding its impact through new elements of the bill.

The Autism CARES Act has been the single most important driver of federal investment in autism research and training programs over the past two decades.

Through the research, training and data collection programs at the National Institutes of Health (NIH), Health Resource and Services Administration (HRSA) and Centers for Disease Control and Prevention (CDC), the Autism CARES Act has resulted in:A lower average diagnosis age and improvements in early intervention services;
Updated data on the prevalence of autism in children and adults across the spectrum and within different demographic and geographic communities;
The training of thousands of health professionals through Leadership Education in Neurodevelopmental and Other Related Disabilities (LEND) sites and Developmental Behavioral Pediatric Training Programs.
Advancements in understanding autism, including the co-occurring physical and mental health conditions that affect autistic individuals at much higher rates;
Actionable data on the significant disparities that autistic people experience in terms of access to quality health care, daily life supports and services, and employment opportunities; and
and development of personalized approaches and evidence-based best practices for serving autistic individuals.

Under the leadership of Autism Caucus Co-Chairs Congressmen Chris Smith and Henry Cuellar, the Autism CARES Act of 2024 was introduced earlier this year to renew the bill before portions of it expire at the end of September. Thanks to their collaboration and commitment to not just sustaining support for federal autism programs but building on progress, the bill now includes several new important elements, many of which were suggested by Autism Speaks and colleague organizations.
In addition to continuing existing federal autism programs, the Autism CARES Act of 2024 now also includes the following enhancements:

1. New language directs the NIH Director to ensure a more inclusive approach to autism research. This change will help to propel greater inclusion of individuals that have been underrepresented in autism research studies, in particular autistic people who require 24-hour care and may struggle with harmful or self-injurious behaviors.
2. The creation of a new Autism Intervention Research Network for Communication Needs will benefit autistic individuals who may be unable or limited in using speech or language to communicate. This would be the third Autism Intervention Research Network established under the Autism CARES Act. The two existing networks focus on physical health and behavioral health and help translate research into clinical practice and community-based resources that serve people with autism and their families.
3. The inclusion of gerontology (the study of the aging process) as a focus area of autism research activities will help propel future research on autism and aging. There are more than 5.4 million autistic adults in the U.S., about 2.2% of the population, yet people on the spectrum are rarely included in aging research and consequently have not benefited from advances in understanding and care of aging populations. Despite autism being a lifelong condition, there is a near-absence of research on ASD in older age and very little is known around how to best serve aging autistic adults. Advancements in this area will help ensure the aging autistic community benefits from research that drives improved quality of life across the lifespan.
4. The Government Accountability Office will be required to issue a study and report on how to increase the number of developmental behavioral pediatricians (DBP). By expanding the DBP workforce, children with a wide range of developmental and behavioral concerns, including autism, would have increased access to evaluation and services that address medical and psychosocial aspects of development. It also sets a higher standard for what quality medical care for children with autism looks like.
5. Approximately $279 million increase in spending on federal autism programs will result from an increase of annual funding authorization levels by $56 million more than the previous iteration of the Autism CARES Act. This results in a total investment of over $2.1 billion over the next 5 years.

The Autism CARES Act of 2024 builds on progress from previous iterations of the law and will help propel forward critical research and training programs that benefit people with autism and their families. We look forward to working with congressional champions to continue to fortify the impact of this legislation and pass it in a timely manner.

Debunking a Claim About Vaccines

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

At USA Today, Chris Mueller debunks a social media claim that vaccines are responsible for a "277-fold" increase in autism prevalence https://www.usatoday.com/story/news/factcheck/2024/05/17/autism-rates-vaccine-injury-legislation-fact-check/73700768007/ 

The post attempts to blame the autism increase on legislation that reduced liability for vaccine manufacturers, but that line of reasoning falls short since an array of studies have found no proof vaccines have any link to autism.

USA TODAY has repeatedly debunked the claim that vaccines are somehow linked to autism. Multiple studies have found no link between receiving vaccines and developing autism, according to the CDC.

The agency cites its own study that looked at the number of antigens given to children during their first two years of life. It found the number of antigens – the "substances in vaccines that cause the body’s immune system to produce disease-fighting antibodies" – was the same in children with or without autism.

In 2014, a meta-analysis of multiple studies determined that "vaccinations are not associated with the development of autism."

The post offers no proof of a connection, and the user who made it didn't respond to a request for comment from USA TODAY. It presents data on autism cases back to 1970 in making its claim of a 277-fold increase, but the CDC says there was little awareness or tracking before the 1980s, when the term autism "was used primarily to refer to autistic disorder and was thought to be rare, affecting approximately one in every 2,000 (0.5%) children." The CDC's autism monitoring program didn't start until 2000.

Vaccines, Measles, and Politics

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. A leading anti-vaxxer is presidential candidate Robert F. Kennedy, Jr.  He has repeatedly compared vaccine mandates to the Holocaust.  Rolling Stone and Salon retracted an RFK article linking vaccines to autism.

He is now running for president as an independent.  At first, Trumpists encouraged his political ambitions in hopes that the Kennedy name would draw votes from Biden.  But now it appears that Kennedy may instead be drawing votes from Trump, who also has a long history as an antivaxxer.

Charles Sykes at MSNBC:

Amid former President Donald Trump’s fire hose of fabulism, feculence and felonies, it can be hard to keep track of his many concerning 2025 pledges. One nugget that may have escaped wider notice is his declaration, made in speech after campaign speech, that he will “not give one penny to any school that has a vaccine mandate.” As Steve Benen notes, “Trump’s rhetoric was neither accidental nor new.” But we also can’t ignore it.

We are occasionally assured that we should take Trump seriously, but not literally. Yet Trump seems committed to this vaccine mandate threat. As Benen notes, the former president has repeated his anti-vax vow “word for word, for at least a year.” And, lest there be any confusion, he occasionally emphasizes that his pledge would apply to every public school “from kindergarten through college.”

Nor does he specifically limit his pledge to Covid-era vaccines.

...

This may just be the tip of a new reactionary anti-vax push. Legislation has been proposed in state legislatures across the country that could limit the use of vaccines for measles, polio and meningitis, often in the name of parental or religious rights. A bill pending in Louisiana would require schools to proactively inform parents of their rights to opt out of the mandates. “We’re against the government telling us what to do with our own bodies,” the legislation’s author, GOP Rep. Kathy Edmonston, insists.

The Republican Legislature in West Virginia passed a bill that would have exempted students attending private, parochial and virtual schools from the mandates. (It was vetoed by GOP Gov. Jim Justice.) Mississippi has seen a dramatic spike in the number of students claiming religious exemptions. In Wisconsin, Democratic Gov. Tony Evers vetoed legislation that would have required public universities and colleges to provide.

AP reports on the West Virginia primary:

In the state’s eastern panhandle, U.S. Army Special Forces Green Beret veteran Tom Willis defeated Republican Senate President Craig Blair, who has helmed the chamber since 2021. And State Health and Human Resources Chair Sen. Mike Maroney was defeated by Chris Rose, a utility company electrician and former coal miner.

Maroney’s loss came after he publicly advocated against a bill pushed by the Republican caucus that would have allowed some students who don’t attend traditional public institutions or participate in group extracurriculars like sports to be exempt from vaccinations typically required for children starting day care or school.

West Virginia is only one of a handful of states in the U.S. that offers only medical exemptions to vaccine requirements. Maroney, a radiologist from Marshall County, called the bill “an embarrassment” on the Senate floor and said he believed lawmakers were harming the state.

In Maroney’s race, Rose had the backing of West Virginians for Health Freedom, a group that advocates against vaccine mandates.

During the debate about this year’s vaccine bill, which was ultimately vetoed by Republican Gov. Jim Justice, Maroney said: “I took an oath to do no harm. There’s zero chance I can vote for this bill.”

 

Ontario has its first death from measles in over a decade. A small child who was unvaccinated. https://t.co/HyhF0gqN5y

As a reminder, measles is also spreading in the U.S. It's a nasty, painful disease, that can end in lifelong disability or death. But anti-vaccine activists… https://t.co/fODsq2rvAU

— Brandy Zadrozny (@BrandyZadrozny) May 17, 2024

Police Training in South Carolina

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

Michaela Leggett at WHNS-TV reports on police training in Greenville County, South Carolina.

The Need for Research Beyond the West

In The Politics of Autism, I discuss international perspectives. I also discuss evaluation, diagnosis, and the uncertainty of prevalence estimates.

Petrus de Vries at The Transmitter:

Almost everything we know about autism comes from a handful of WEIRD (Western, educated, industrialized, rich and democratic) countries in the so-called “global north,” yet most autistic people live in low- and middle-income countries (LMICs) around the globe that are quite different from these predominantly English-speaking nations. In a review conducted in 2017, my colleagues and I discovered that less than 1 percent of all autism research to date was performed in Africa, a continent that is predicted by UNICEF to be the home of more than 40 percent of the world’s children by 2050. At the service level, the majority of people in LMICs receive no diagnoses or supports, and in the few—typically urban—areas that can offer services, families often have to pay out of their own pocket. Finding strategies to meet the needs of autistic people and their families in LMICs is therefore fast approaching critical levels.

Scientists have made some progress toward diversifying autism research in high-income countries, by setting up initiatives to increase the diversity, equity and inclusion of the researchers, organizations and communities involved. My colleagues and I acknowledge those efforts. But unless autism research becomes diverse and global at the same time, we will retain the “knowledge gap” between the high-income/English-speaking nations and the rest of the world.

The International Society for Autism Research (INSAR) annual meeting begins tomorrow in Melbourne, Australia. Having this meeting in Australia, rather than in the U.S. or Europe as has previously been the case, is a values-based action intended to make it easier for researchers, clinicians and advocates from the Western Pacific Region to participate. The program deliberately includes panels and special-interest groups on the perspectives and needs of Indigenous, minority and other marginalized groups across the Western Pacific Region. Discussions are also slated to include the research priorities of diverse communities across the globe.