…displacement is the rust on the razor that threatens the throat. It is an unnecessary insult.
~Maya Angelou, I Know Why the Caged Bird Sings
A recent study in Pediatrics reports that autism rates now appear to be higher among the children of American born Hispanic and African American mothers and among children of mothers within certain immigrant groups:
The study group comprised children born in Los Angeles County with a primary diagnosis of autism at ages three to five years from 1998 through 2009. The children were linked to 1995–2006 California birth certificates (7,540 children with autism from a total 1,626,354 births). The investigators identified a subgroup of children with autism and a secondary diagnosis of mental retardation; they investigated differences in language and behavior among this subgroup.
The researchers found an increased risks of being diagnosed with autism overall and specifically with coexisting mental retardation in children of foreign-born mothers who were black, Central/South American, Filipino, and Vietnamese, as well as among United States-born Hispanic and African American/black mothers, compared with US-born Caucasians. Compared to children of US-born Caucasians, children of US African American/black and foreign-born black, foreign-born Central/South American, and US-born Hispanic mothers were at higher risk of autism, characterized by both severe emotional outbursts and impaired language skills.
This report is a dramatic turnaround from only a few years ago, when the CDC reported an entirely different pattern among ethnic groups in the US:
Non-Hispanic white children were approximately 30% more likely to be identified with ASD than non-Hispanic black children and were almost 50% more likely to be identified with ASD than Hispanic children.
The earlier CDC study went on to say that it was unknown whether the disparities in ethnic rates existed because of differences in recognition or diagnosing:
The extent to which this variation might be attributable to diagnostic practices, underrecognition of ASD symptoms in some racial/ethnic groups, socioeconomic disparities in access to services, and regional differences in clinical or school-based practices that might influence the findings in this report is unclear.
But as David Kirby reported in the Huffington Post in 2009, not even National Institute of Health director Thomas Insel thought the rise in autism could be explained away by changes in diagnostic practices or “increased recognition,” so it might follow that the formerly low rates of autism among minority children could not be entirely explained by lack of recognition. Not only were rates of autism among minorities lower, as autism rose among white children in the US, rates among Hispanics in some regions were even dropping:
In 2006, the rate among non-Hispanic white children was 102-per-10,000, but among black children it was 76-per-10,000, a 34 percent difference, and among Hispanic children it was 61-per-10,000, a difference of 67 percent.
Inexplicably, the rate among Hispanics in Alabama actually plummeted during the period in question, by 68 percent, from an already low 19-per-10,000 in 2002 to an almost rare 6-per-10,000 in 2006. Meanwhile, with the exception of Arizona, the CDC said, "prevalence among Hispanic children did not change significantly within any of the other10 sites."
For the record, my own affected twins have sixteen different nationalities, including Hispanic, North African and Amerindian as well as European. Regarding the issue of autism within various ethnic communities, when rates were low there were many public discussions of “cultural differences” that could supposedly account for cases being ignored, as if minority parents don’t notice or care when children don’t reach milestones, or that there’s more “cultural acceptance” in some quarters of children who don’t speak, sleep or who exhibit endless raging meltdowns. It should be interesting to hear what the next apologia will be now that rates among the same groups have exploded, and bitterly fascinating to see whether the pop-psych hypothesis of the “autistic killer” receives more media play as a result of the epidemic being racialized, particularly in light of the fact that the theory was founded on arguably racist research. It will also be curious to watch what happens with “investor confidence” in the multi-billion dollar autism drug market now that fresh blood has been thrown into the pool.
What’s also bitterly fascinating—and not mentioned in media coverage of the recent study on high rates of autism among ethnic groups— is that there had also been a radical shift in ethnic and economic demographics regarding vaccine uptake. At one time, for instance, African Americans were the least compliant and most “under-vaccinated”:
Factors That Distinguish Fully Vaccinated Children from Undervaccinated Children (2001 NIS)
These analyses indicated that, compared with fully vaccinated children, undervaccinated children were significantly more likely to be black than Hispanic or non-Hispanic white; younger; or foreign-born than born in the United States. Undervaccinated children were significantly more likely to have a mother who was young; widowed, divorced, or separated than married; had educational attainment that was high school or less than a college degree; and whose preferred language was English than Spanish. Finally, undervaccinated children were significantly more likely to live in a household with an annual income below the poverty level than in a household with an annual income greater than $75 000…
Unfortunately the study above, which was originally accessed in June, 2011, may have been bowdlerized—the title and text altered. In any case, the old link to the 2001 study (Pediatrics) now redirects to a 2004 study which weaves in the updated issue of “unvaccinated” privileged white children whose parents avoid vaccines rather than having reduced access—something not mentioned at all in the 2001 study. The original 2001 title appears only in the citations of other studies at this point.
Potential statistical Pravdaization aside, there is an evident trail of past research showing that vaccination rates among minorities were once considered a serious problem, and it’s clear that campaigns and programs to improve vaccine compliance among minorities and the poor have increased in recent years and continue full throttle. An article entitled Closing the Immunization Gap in the publication Minority Nurse reports,
Current federal minority health initiatives, such as the Department of Health and Human Services (HHS)’s Initiative to Eliminate Racial and Ethnic Disparities in Health, HHS’ Healthy People 2010 program and the Centers for Disease Control and Prevention (CDC)’s Racial and Ethnic Approaches to Community Health (REACH) 2010 program, have helped spark vigorous efforts to close the gap in immunization rates between minority and Caucasian populations. Immunizations, for both children and adults, have been identified as one of six key areas in which Americans of color experience serious disparities in health outcomes compared to their majority counterparts.
“In general, minority populations tend to be underserved in all areas of health care, including immunizations,” says Carolyn Montoya, RN, MSN, CPNP, the 2001-2002 president of the American College of Nurse Practitioners (ACNP) and current spokesperson for the Voices for Childhood Immunization program. (The program is a collaborative effort between ACNP, the American Nurses Association and the National Association of Pediatric Nurse Practitioners.)
The target date for eliminating disparities in all six areas--which also include infant mortality, cancer screening and management, cardiovascular disease, diabetes and HIV/AIDS--is 2010. The specific goals for immunization include increasing influenza and pneumococcal vaccinations within minority populations by 60% among all adults aged 65 years and older and achieving and maintaining childhood immunization rates at 90%.
The CDC is helping to fund two major programs aimed at achieving these standards. Racial and Ethnic Adult Disparities in Immunizations (READII), a program run in collaboration with HHS’ Department of Minority Health, targets minority elders. In addition, two of the 36 REACH 2010 projects currently being funded by CDC focus on immunizations.
“We have narrowed the gap significantly when it comes to childhood immunizations, but [in adults age 65 and older] there are disparities in immunization, primarily in influenza and pneumococcal vaccinations,” says Curtis Allen, a public affairs specialist with the CDC’s National Immunization Program (NIP). “The reasons for the disparities are many and it is not necessarily a matter of access.” Even among the minority populations that are most likely to be vaccinated--those with the highest education levels and people who make frequent visits to health care providers--the disparities still exist, Allen reports.
The campaign to research reasons for former low vaccine uptake among minorities and to increase compliance had actually begun much earlier than 2010 when the article above was written. For example, in 2002, rates of immunization among African American toddlers were still considered woefully low until state Medicaid and other public assistance systems began tracking compliance for recipients. But the state programs often do more than simply track. For instance, food stamp application forms began inquiring about vaccination status of recipients; and the WIC program is used for vaccine surveillance and “education,” which many parents characterize as “pressured” and coercive. Furthermore, many parents—particularly those who are fully reliant on public programs and state insurance (not using it merely as a wavier or supplement) — have frequently alleged encountering harassment and coercion over medical choices by medical personnel. This may be partly due to the implementation of “Medical Home” quality measures which boast increased rate of vaccination for participating doctors; and “P4P”—government Pay for Performance incentives given to doctors for high vaccination rates.
P4P has predictably led to the “firing” of noncompliant patients. P4P incentivizes a range of treatments and includes both public and private insurance plans, but poor clients who are fully reliant on government programs—who also reportedly have a hard time finding Medicaid-friendly doctors who tolerate an alternative vaccination schedule to begin with— may be easier to bully into unwanted or excessive treatment. An extreme form of coercion involves threats to contact Child Protective Services to report parental “medical neglect”— a practice which, according to documented testimonies, has increased in recent years. In that sense it’s curious that “coercion” is in the language used by the United States Agency for International Development (currently headed by former Gates Foundation director Rajiv Shah) for recommended implementation of P4P in third world countries, where the practice has apparently led to coercive practices against patients for the financial benefit of physicians.
But have increased vaccination rates for the formerly “underserved” actually improved health among minority groups? What little available data exists doesn’t make the case for it. For example, in the wake of federal campaigns to vaccinate minorities and incentives for increased immunization rates, Hispanic children still suffer the highest mortality rate from the very diseases the community is “better immunized” for than the white community. And, according to a 2009 CDC study, Hispanic children now have the fastest growing autism rate in the country:
Diagnoses among Hispanic children rose 90% in the latest study. Autism among white youths rose 55% and they were far more likely to be diagnosed than African-Americans or Hispanics. The diagnosis rate among black children went up 41%.
Dr. Rice also said she couldn't rule out an actual increase in the number of autistic children. Research is under way into possible environmental factors, including vaccinations, household products and diet, as well as genetics, for potential causes, she said.
The report meshes with research by Carolyn Gallagher and Melody Goodwin who found that Hispanic male infants exposed to the Hepatitis B vaccine at birth showed a statistically significant increased risk of developing autism compared to those who did not receive the vaccine.
Compare these statistics with those from another headline-feeding study published in 2009 in the New England Journal of Medicine entitled Vaccine Refusal, Mandatory Immunization, and the Risks of Vaccine-Preventable Diseases:
Who Refuses Vaccines and Why
Using data from the National Immunization Survey for the period from 1995 through 2001, Smith et al. compared the characteristics of children between the ages of 19 and 35 months who did not receive any vaccine (unvaccinated) with the characteristics of those who were partially vaccinated (undervaccinated).47 As compared with the undervaccinated children, the unvaccinated children were more likely to be male, to be white, to belong to households with higher income, to have a married mother with a college education, and to live with four or more children. 47 Other studies have shown that children who are unvaccinated are likely to belong to families that intentionally refuse vaccines, whereas children who are undervaccinated are likely to have missed some vaccinations because of factors related to the health care system or sociodemographic characteristics…Moreover, parents of exempt children were more likely than parents of vaccinated children both to have providers who offered complementary or alternative health care and to obtain information from the Internet and groups opposed to aspects of immunization. The most frequent reason for nonvaccination, stated by 69% of the parents, was concern that the vaccine might cause harm.
In the NEJM study, the focus is not on the radical ethnic and economic shift in noncompliance but on other factors. Aside from raising an alarm over the “sociodemographic” trend of decreased vaccine uptake among children of the privileged, the internet is viewed as a vector in spreading misinformation on vaccine safety—spreading panic. That refrain has been spun in various ways since. A bit like the Council of Toulouse banning the laity from owning translations of the bible, Roy Grinker for Psychiatry Online blames the democratization of the internet for the spread of medical dissent.
…the democratization of science has created a special problem in the 21st century: the Internet provides a diverse array of information but also empowers users to trust their own expertise and to find validation from individuals and groups that share their opinions.
Most Americans celebrate the new availability of information. Access to the knowledge of the intellectual elite affirms our democratic ideals. But as with Jacksonian democracy during the 1830s, when the masses became convinced that they were just as capable and knowledgeable as doctors (and nearly put all American medical schools out of business), there is a dark side. The typical reader does not necessarily understand how to discriminate between or evaluate the validity of different sources. For many Internet users, a blogger's opinion and a peer-reviewed scientific article may have equal weight. The Internet thus empowers conspiracy theorists as well as fringe researchers who carry out junk science and disseminate research results and interpretations favorable to the antivaccine movement.
No matter how the information is interpreted, there’s clearly a problem with public faith in vaccination. The pharmaceutical industry and health authorities have been chagrined enough to launch investigations and have attempted to draw their own conclusions on the what (unapproved interpretations of science), why (democratization of science), who (educated parents of means), and how (the internet) of the issue and to address it.
I won’t delve too deeply into the unprecedented rate of autism among some of the immigrant groups mentioned in recent reports—rates which often do not match statistics in countries of origin— because greater study needs to be made of vaccine requirements as a stipulation of immigration from certain countries, particularly if these nations are viewed as unstable. But it’s worth mentioning controversies briefly, such as the fact that autism among the children of Somali émigrés living Minnesota is a staggering 1 in 26, although the condition is apparently rare in Somalia. According to anecdotal reports, many Somali women of child bearing age, pregnant women and small children were vaccinated with full mercury preparations before emigrating and then, when vaccine records from Somalia were rejected upon arrival in the US, these individuals were forced to receive the same vaccines a second time, on top of receiving vaccines that aren’t on the American schedule. As a result of these claims and the shocking rate of disability, the Somali community has apparently begun to resist vaccinations to some degree and is currently being blamed—along with the usual targets like Dr. Andrew Wakefield and vaccine safety advocates— for setting off a measles outbreak in Minnesota. What reports on the Midwestern “outbreak” omit is that a larger outbreak in New York City traced back to a fully vaccinated theater employee, and that the bulk of measles cases in the US have been attributed mostly to vaccine failure, not under-vaccination.
What would constitute “under-vaccinated” varies from era to era. The children in the NIS sample excerpted earlier, had they received roughly a third the vaccines required in 2001, would have been ahead of the curve since, in 1970, only 7 vaccines were required from birth to age 18. By 2001, the number of required vaccines had risen to over 30, though “counting syringes” underestimates the rise in required doses. In point of fact, whereas in 1970 a total of 24 doses of 7 vaccines were recommended between birth and age 18, today 115 doses of 16vaccines are on the recommended childhood vaccine schedule if multiple antigens and antigens for the same diseases are counted (i.e., 5 separate strains of rotavirus in the Rotateq vaccine).
As the number of required vaccines and rates of chronic disease among children continue their parallel rise and the public and independent science continue to draw a connection between the two phenomena, the official manner of addressing medical resistance in all demographics seems to increasingly involve coercion and demonization of dissent. For example, though the most prominent vaccine safety organizations in the US take a moderate stance on immunization, demanding more industry and government accountability, the removal of toxic additives and a more conservative and voluntary vaccine schedule, all are stubbornly labeled “anti-vaccine”—a bit like calling Ralph Nader’s seatbelt campaign “anti-transportation.” And in an article for Slate entitled,Endangering the Herd, The case for suing parents who don’t vaccinate their kids—or criminally charging them, Jed Lipinski writes,
…a provocative paper in the Journal of Law, Medicine and Ethics[explores] whether there’s a case for holding people legally accountable for the damage they cause by not vaccinating their children. “One can make a legitimate, state-sanctioned choice not to vaccinate,” the bioethicist Arthur L. Caplan and his co-authors write, “but that does not protect the person making that choice against the consequences of that choice for others.” Since epidemiologists today can reliably determine the source of a viral infection, the authors argue, a parent who decides not to vaccinate his kid and thus endangers another child is clearly at fault and could be charged with criminally negligent homicide or sued for damages…
Dorit Rubinstein Reiss, a professor of law at UC Hastings College of the Law and author of the blog Before Vaccines, argues in support of Caplan and his co-authors that if you fail to take reasonable precautions to prevent your child from transmitting a deadly virus to another child, you should bear the cost of that risk. If the government doesn’t impose liability, it is giving anti-vaxxer parents a free pass for posing a danger.
It seems like both the privileged and “underserved” are on the menu now and the country may be coming close to the day when industry and health authorities forego persuasion and propaganda in favor of force. But until that day comes, we’ll probably be seeing a few more last-ditch PR gags, like the old “divide and conquer” standby. Based on current statistics that affluent parents are less likely to vaccinate on schedule, vaccine defenders within industry-embedded media and pharmaceutical front groups appear to be trying to spark “class resentment,” as if disparate rates of vaccination between classes and ethnic groups were being caused by “affluenza”—a case of the rich free-riding off the better vaccination status of the poor.
But so far the wag-the-dog spin has failed to set off any hoped-for class warfare over vaccines. Something like this could potentially rise up over economic issues as more Americans are plunged into poverty; but if a mass protest were ever to foment over immunization, it’s less likely that it would be aimed at those foregoing than those attempting to force the issue. In any event, it’s not surprising that the richest lobby in the world and their hired teams of weaponized sociologists who “study” public attitudes and views in order to cobble together skewed, sponsor-friendly reports are completely disconnected from the actual attitudes and views of the economically disadvantaged. These aren’t objective observers after all but propagandists, deployed to steer and engineer public attitudes more than measure them.
All the same, the PR trolls aren’t the only ones missing the point. Even within vaccine safety advocacy circles, the takeaway drawn from the current vaccination disparity between ethnic and economic groups is usually that parents with higher education status are more likely to personally research risks and benefits and make choices based on this. In other words, the privileged are more cautious because they know more.
Since when though? Knowledge without experience is abstract. As the middle class starts to sink, and as globalization spreads and international corporations increasingly show no loyalty to any country or population, viewing all consumers as fair game, could it simply be that the mainstream in the US are gaining in experience and waking up to the fact that they too can be consumed and used as lab rats? Are more Americans feeling a certain pain usually reserved for the disadvantaged, and is that pain driving some to inform themselves? Again, vaccine resistance was once highest among African Americans and other minority groups in the US. It’s a case where the view from the bottom may actually be far more educational in many respects.
It’s impossible to get around the fact that, to date, minority groups in America are still among the most economically disadvantaged demographics in general and many of these groups have historically been used as guinea pigs in the industrial age. Ironically, African Americans have been repeatedly studied to determine the source of distrust in the healthcare system while still suffering from clinical racism far more currently than the Tuskegee syphilis experiment. There is presently a mass movement of First Nations groups to protest a genocidal rate of child displacement which has come in tow with forced drugging of Native American children in foster care, and follows a history of the use of indigenous people in unethical vaccine and other medical experiments in North America. It’s not that the poor and minorities in the US “don’t know better” in many cases. But what has been displaced—again— may be the right to act on that knowledge.
There’s a “tale of two systems” in the US that is under-acknowledged. The face of the system seen by the economically disadvantaged might be very different than the face of the same system seen by those with resources. And as those knots tightens for even those with resources, it’s important to realize that the view from the bottom rungs may be changing for the worse as well. Again, the economically disadvantaged and those who are fully dependent on state programs are far easier to coerce into medical compliance regardless of what they might prefer, regardless of what they know— and the results may be the unnecessary and preventable explosion in disability within communities that can least bear the crushing weight of the epidemic.
Adriana Gamondes is a contributing editor for Age of Autism and one of the blog’s Facebook administrators. She lives with her husband and recovering twins.