Why the Autism "Community" Can’t Get Along

The idea of a “community” in autism activism is a farce. This is because many who are deemed to be part of this community have opposing goals. From my experience, three completely different groups exist. Though there is crossover between some of the groups, the ends are polarized and cannot unite. Below is my perception of the groups, though more groups might exist that are less well-known.

Vaccine-injury Conspiracists

This group believes that autism is a preventable injury. Though no science supports this theory, they hold on to bogus research claims and snake oil. The bulk of this group believes that the pharmaceutical industry has created dangerous vaccines as a way to make more profit (by using cheaper but harmful additives and ingredients or creating unnecessary vaccinations). Others take the theory a little further and believe that the industry is purposefully poisoning the people. Regardless of how extreme, this group tends to believe in pseudoscience and promotes sometimes dangerous “snake-oil” treatments in attempt to cure autism. Groups such as Talk About Curing Autism and Age of Autism are examples of this group’s mentality.

Eugenicists

This group consists of those who seek to eradicate the possibility of new autism births. They seek to find a prenatal test that can identify the likelihood of having a child on the autism spectrum so that families may be given the opportunity to terminate an at-risk pregnancy. They also seek to find ways to keep the so-called disorder from happening – presuming autism is a preventable defect (think Fetal Alcohol Syndrome). They hope to find a “cure” for those they believe are “suffering with autism.” They throw millions of dollars into “awareness campaigns” that stigmatize those who are on the spectrum. They also fund research that might further their goals. A good example of this group is Autism Speaks.

Neurodiverse

This is where the self-advocates, often identifying as autistic, tend to flourish. This group believes that disability is natural and that autism is a neurological difference and a variant of human diversity. This group vehemently opposes that autism should be prevented or cured. Led by disability activists, this marginalized group has been compared to the civil rights movements of the past. Their motto is “Nothing about us, without us!” This group promotes “acceptance” rather than awareness. Most of this group consists of those identifying as autistic. In the recent past, however, many non-autistic (aka allistic) allies have joined in support of the neurodiverse message. This group has been notoriously labeled by other groups as “too angry.” Others have attempted to discredit the movement by insinuating the members are not truly disabled and are NLMC (not like my child). A couple examples of this movement are the Autistic Self Advocacy Network and the Autism Women’s Network.

You may already be able to discern why these groups cannot converge. Here are a few ways they do and do not.

Convergence

Eugenicists and Conspiracists
These two groups agree that autism is potentially preventable and treatable. Both tend to infantilize autism as believing it only affects children (somehow magically disappearing in adulthood).

Neurodiverse and Eugenicists
There is very little agreement between these two groups. Both groups do support scientific research about autism but the support for research focus is very different.

Conspiracists and Neurodiverse
I am at a loss to find any common ground with these two groups.

Divergence

Eugenicists vs. Conspiracists
The eugenicists represent legitimate (albeit ethically questionable) science. The conspiracists do not.

Eugenicists vs. Neurodiverse
The neurodiverse are strongly against cures and prevention for autism and consider autism a natural human variant. The eugenicists are strongly for cures and prevention and consider autism a disease or affliction. Eugenicists seek social awareness while the neurodiverse seek social acceptance.

Neurodiverse vs. Conspiracists
Conspiracists believe that all cases of autism are preventable injury and fight to stop this so-called injury. They promote treatments that are often harmful and dangerous. Neurodiverse do not support questionable treatments for autism nor do they support the idea that autism is caused by a preventable injury.

It is probably not so hard to see why there is little community behavior between these groups. It is unrealistic to believe that they will ever converge because they simply do not share the same goals. Community generally refers to common ground. It is not only unrealistic to infer we should all “just get along,” it is offensive. What most really mean by that statement is that the marginalized group should be silenced.
I won’t deny that there are people who do not fit neatly into any of the three groups. Often we hear those who say they support the neurodiverse message but still seek a cure for some. These statements are in disharmony and make little sense. Realistically, these people are supporters of the eugenics or conspiracists groups but do not want to identify as such. You simply cannot be for finding a cure for autism and at the same time believe autism is a natural part of human diversity.
For those who read my blog, it is probably easy to see that I am an ally to the neurodiversity movement. My belief is that those who are labeled – are living with a disability, should be calling the shots. I believe that people on the spectrum should have a voice no matter whether their voice is through augmentative communication or their vocal chords. I cannot possibly imagine that I, an onlooker, should have more say than this marginalized group of people. I don’t get to determine how they should think and feel anymore then they do for me. This is their battle and I proudly stand beside them in support. As a parent, I stand beside my autistic son and let him be my guide.
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>Overcoming the Stigma of Vaccination

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Public health organizations are doing a poor job of advocating for vaccination. Conversely, anti-vaccination groups are successfully spreading misinformation and discouraging vaccination. In Michael Willrich’s New York Times editorial, Why Parents Fear the Needle, he argues that health organizations are doing little to counter misinformation and reassure the public about safety.1 It is possible that his argument is valid. Though a 2009 study showed immunization of U.S. infants remained at about ninety percent2, in 2010, forty percent of U.S. families postponed or declined vaccines for their children.3 Fear is usually the driving force behind refusal to vaccinate and is mostly caused by ignorance. Lack of clear and accessible information about the real risks of vaccines increases suspicion and makes the public susceptible to deceitful practices. The absence of good information appears to cause families to depend on more readily available nonsense.


As Willrich points out, vaccines have always been a subject of public scrutiny. The smallpox vaccine, developed in the late 1800s, began a surge of fearful and angry anti-vaccination groups. The concept of injecting a living disease into a healthy person seemed a foolish way to fend off illness. Anger was largely due to government health organizations forcing vaccination on the public without assuring public safety.4 These organizations did not tell the public about benefits and risks, yet forced them to submit to vaccination. Adding to public fear, a handful of citizens contracted tetanus after receiving the diphtheria vaccine in 1901. This caused a nationwide panic and a halt to vaccination for some time. Later, it was found the infections were due to an exposure to tetanus at the injection wound site.5 Though found unrelated to the actual vaccine ingredients, the outbreak added to the public’s already damaged perception of vaccines.

Willrich fails to mention two important issues affecting today’s vaccination rates. Complacency and boundless exposure to media opinion have contributed to the anti-vaccination movement. Most citizens no longer fear contracting deadly epidemics such as polio. Numerous serious diseases have ceased to exist thanks to vaccination. Immunity, however, has caused the public to become over-confident and forget.6 Complacency and media exposure create a perfect mix for conspiracy theorists. Many believe there is a conspiracy to poison citizens in the name of profit. Despite this seemingly new trend, however, celebrities and media have long been a source of anti-vaccination rhetoric. In the 1900s, George Bernard Shaw publicly declared vaccines a “filthy piece of witchcraft.” 7 After the premier of the smallpox vaccine, political satirist, James Gillray, published a cartoon depicting vaccinated people morphing into cow-like creatures.8 In more recent times, actress and former Playboy model, Jenny McCarthy faulted childhood vaccinations as the cause of her child’s Autism. McCarthy co-authored a book on the matter, entitled Healing and Preventing Autism.9 Though not completely new, misinformed celebrities and complacency have endorsed the anti-vaccination mentality.

Another aspect, Willrich seems to omit, is the power of the anti-vaccination groups. Such groups continue to perpetuate fear using arguments very similar to those of the 19th century’s groups.10 Today, however, these groups are highly visible thanks to the Internet. The multitude of deception on the Internet has increased public suspicion. Deceivingly harmless advocacy organizations, such as Age of Autism and the National Autism Society, have an expansive presence on the World Wide Web. These anti-vaccination groups thrive on misinformation and label scientific study, that does not support their mission, as tainted. Groups sometimes accuse families who vaccinate of being part of a large conspiracy. Groups such as these appear to prey on desperation, confusion and ignorance. In some cases, groups use deceit and fear for profit. Corrupt groups often promote alternative and sometimes dangerous treatments with hefty price tags. In most cases, treatments are not medically approved and hence, not covered by health insurance. Families frequently shell out thousands of dollars in a month to receive questionable treatments, unproven herbal drugs, and other alternative medicine. These families are led to believe they are healing vaccine injury.11

Misinformed and corrupted science also adds to current fears. Fueling the fire for the anti-vaccination movement, in 1998 British researcher, Andrew Wakefield claimed to have found a clear link to the MMR (measles, mumps and rubella) vaccine and Autism. Though countless scientific studies around the globe could find no correlation, Wakefield declared to have proof. Since no other researcher could duplicate his results, Wakefield’s study was highly scrutinized. It was this intense examination that uncovered a falsified report. Soon after, Mr. Wakefield’s motives became apparent. He had been working on developing his own variety of the MMR vaccine. Add to this, he hand-picked his test subjects using anti-vaccination groups who not only financed the study, but had planned grandiose litigation once the study was complete.12 Despite the very public exposure of Wakefield’s crime, one in five parents still believes that vaccines cause Autism.13 His crime left a legacy of misinformation and helped increase the public’s fear of vaccines.

It is clear that a good deal of information exists to help us understand the reason for public fear of vaccines. On the other hand, as Willrich notes, reputable and clear scientific information on vaccination risks and benefits is not as available. In the recent past, the heath organizations have mostly remained silent and relied on health care providers, such as pediatricians, to persuade their patients and families to vaccinate. While on the surface this appears a reasonable approach, a recent survey showed that though eighty-seven percent of doctors said they talked about vaccination with all their patients, forty-seven percent of patients claimed their doctor never mentioned vaccines.14 This leads us to wonder how confident even the doctors are in recommending vaccination to their patients. It is obvious, the health organizations need to take a firm step toward better education for all the public, including health care providers.

The health organizations need to use an accessible approach to teach the public about vaccine safety. Willrich affirms that they must use the power of the Internet. And though the health organizations may argue that they do, the current information on the World Wide Web is mostly incomprehensible to the average citizen. At the Center for Disease Control and World Health Organization websites, documentation reads much like a sophisticated medical journal. In order to foster a better understanding, the health organizations must use language that clearly and effectively gives citizens a chance to comprehend the benefits and risks of vaccination. These organizations must find ways to make information accessible for all walks of life. Until the health organizations prepare and widely distribute information that is accessible, the conspiracy theorists and anti-vaccination groups will continue to grow.

Health organizations have begun fighting misinformation with more rhetoric as another ineffective way to promote vaccination. Willrich says it very clearly. “Why waste another breath vilifying the anti-vaccination minority when steps can be taken to expand the pro-vaccine majority?”15 Indeed it appears, that rather than ignoring the misguided messages of the anti-vaccination movement, the health organizations seem bent on fighting fire with fire. Opinion pieces do little to make the public feel safer. Better the health organizations should promote scientifically proven risks and benefits of vaccination. Another problem with this method is, by acknowledging the misinformation, they are also lending some validity to the argument. As Shakespeare’s Queen said, “The lady doth protest too much, methinks.”16

Michael Willrich sums up the argument, nicely. “Until officials realize that, and learn how to counter such deep-seated concerns, the paranoia – and the public-health risk it poses – will remain.”17 Lack of accessible information, complacency due to eradication of many deadly diseases and public suspicion will continue to keep some from vaccinating. Until the world health organizations change their methods to an educational approach, ignorance and misinformation will continue to reign.




1Michael Willrich, “Why Parents Fear the Needle,” New York Times, January 21, 2011. http://www.nytimes.com/2011/01/21/opinion/21willrich.html.

2“CDC Survey Finds Childhood Immunization Rates Remain High,” U.S. Department of Health and Human Services, September 16, 2010, http://www.cdc.gov/media/pressrel/2010/r100916.htm.

3Michael Willrich, “Why Parents Fear the Needle,” New York Times, January 21, 2011. http://www.nytimes.com/2011/01/21/opinion/21willrich.html.

4“Smallpox: Resistance to Vaccination,” U.S. National Library of Medicine, October 2002, www.nlm.nih.gov/exhibition/smallpox/sp_resistance.html.

5Joseph Mcfarland, M.D., “Tetanus and Vaccination.1- An Analytical Study of Ninety-Five Cases of this Rare Complication,” J Med Res. 7(4), (1902): 474–493.

6Senier, L. , “Risk Balanced by Trust: Parental Perception of Vaccine Risks”, 2005-08-12, http://www.allacademic.com/meta/p22083_index.html.

7“Smallpox: Resistance to Vaccination,” U.S. National Library of Medicine, October 2002, www.nlm.nih.gov/exhibition/smallpox/sp_resistance.html.

8Ibid.
9Jeffrey Kluger , “Jenny McCarthy on Autism and Vaccines,” Time Magazine, Apr. 01, 2009, http://www.time.com/time/health/article/0,8599,1888718,00.html.

10Robert M Wolfe, “Anti-vaccinationists past and present,” BMJ., 325(7361), (2002): 430–432.

11Blue Cross and Blue Shield Association, “On shaky ground with alternative treatments to autism,” http://www.bcbs.com/news/wellness/on-shaky-ground-with-alternative-treatments-to-autism.html.

12Brian Deer, “How the case against the MMR vaccine was fixed,” BMJ , (2011): 342:c5347.

13Michael Willrich, “Why Parents Fear the Needle,” New York Times, January 21, 2011. http://www.nytimes.com/2011/01/21/opinion/21willrich.html.

14Steven Reinberg, “CDC Report Finds Adult Vaccination Rates Still Lagging,” HealthDay , November 17, 2010, http://health.msn.com/health-topics/articlepage.aspx?cp-documentid=100266932.

15Michael Willrich, “Why Parents Fear the Needle,” New York Times, January 21, 2011. http://www.nytimes.com/2011/01/21/opinion/21willrich.html
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16Macrone, Michael. “The lady doth protest too much.” Brush Up Your Shakespeare. Cader Company, 1990. eNotes.com. 2007. 12 Feb, 2011 http://www.enotes.com/shakespeare-quotes/lady-doth-protest-too-much-methinks.
17Michael Willrich, “Why Parents Fear the Needle,” New York Times, January 21, 2011. http://www.nytimes.com/2011/01/21/opinion/21willrich.html.