April is Autism Awareness Month and I have chosen to make folks aware of the complexities and conundrums surrounding its politics, which are replete with divisions, debates, and diatribes fueled by self-advocates, special interests, activists, militants, and conspiracy theorists. The two main camps — though each has its own sub-groups, factions, and radical element — consist of people who view autism as a devastating neurological disorder that must be cured, prevented, and eradicated, and those who see autistic people as having a natural variation of human neurological wiring that must be tolerated, accommodated, and respected.
The main reason why the politics of autism are so polarized is that nobody knows very much about autism, so individual perceptions and experiences, as well as popular conjecture and tendentious groupthink, are often used to bridge the rather wide gaps that modern scientific research has yet to definitively fill. In the province of the politics of autism, partisanship often appears to fall within the realm of constitution, character, and coping skills in dealing with having a child or other family member who is autistic, accepting the fact that some people are autistic, or being autistic in a society that marginalizes autistic people.
Autism is a permanent, life-long disability that presents in a wide variety of manifestations, which are diagnosed along a broad spectrum of dysfunctions and disorders. Typical features of autism are impaired communication and/or social skills, repetitive motions and/or behaviors, and obsession with rituals and/or routines. The cause is unknown and there is no cure. Hypotheses currently competing to become the emerging theory of autism’s origins are; that autism is very likely genetic, that there is a small chance autism could be caused by environmental factors, and that autism may be the result of some as yet unknown serendipitous convocation of nature and nurture.
The only widely accepted, standard treatments for autism consist of modalities that help autistic people to function in society according to their individual abilities. The most common intervention for autistic children is enrollment in an exceptional education program that includes speech and occupational therapy. Medication is usually not prescribed to treat autism itself, but appropriate drug therapy can be helpful to autistic people who suffer from comorbid conditions, such as difficulties with digestion, allergies, or seizures.
Although autism can be very hard for families to confront, and is sometimes difficult for autistic individuals themselves, autistic people of nearly every apparent ability can lead satisfying lives; attend college, earn a living, get married, have children, etc — if they so choose. Some autistics have used their exceptional perspicacity to make innovative contributions to society, and a number are published authors, and/or respected authorities in their individual areas of expertise.
The Autism Rights Movement
The advent of the Internet has made it possible for autistic people to communicate their perspective with one another and the world. Some autistic adults can write very well despite being mute, and they are quite able to effectively, and often rather eloquently, present their case for the recognition of autistics’ rights and societal acceptance of autism. A number of autistic people also express their point of view via Internet video.
The Autism Rights Movement, which was started by autistic adults who feel marginalized by characterizations of autism as a tragedy, a disease, and an epidemic, demands acceptance for neurodiversity, the concept of atypical neurological wiring being a naturally occurring variation of the human condition that should be tolerated and respected like any other form of human diversity. It is for this reason that autistic people usually avoid the word “normal” when describing people with conventional neurological wiring, instead preferring to use the term “neurotypical.”
Many autistic people have articulated that they are very offended by the idea of curing and preventing autism, a notion which a number of them consider tantamount to genocide. They believe a cure for autism would destroy autistic people, and their culture, in a misguided attempt to replace them with different, neurotypical, people. The vast majority of autistic people who can communicate their sentiments via the written or spoken word do not desire a cure, but rather to be afforded opportunities to use their unique skills and perceptions in useful and productive ways.
In addition to challenging descriptions of autism they consider incorrect, and/or insulting, the goals of the movement are to question the ethics and science of new and/or experimental treatments for autism, expose quackery and fraud, persuade autism charities, schools, and other organizations to invite autistic adults to serve on their advisory boards, and appeal to governments for better public education programs for autistic children and improved social services for autistic adults.
The view that autism is not a disorder but simply a different way of being is presently a controversial idea that is strongly criticized by parents who hope to someday see their autistic children become neurotypical, as well as by the individuals and organizations that capitalize on families who are, for better or worse, possessed of such wishes.
The controversy does not originate from the practice of treating severe manifestations of autism — self-injurious behaviors, seizures, allergies, etc — as most people agree that that such problems should be addressed to the best ability of medical science, and that no halfway decent parent would allow a child to suffer sickness or injury if there was proven medication or therapy available to ease that child’s pain.
What causes most of the friction between autistic people and the neurotypical folks they sometimes refer to as “curebies,” is the belief that the non-medical, non-injurious aspects of autism, such as arm flapping, toe-walking, spinning, repetitious behaviors, narrow interests, withdrawal in social situations, etc, should be treated aggressively, sometimes by experimental or scientifically questionable means, in the hope that the autistic child will eventually appear/become neurotypical.
This is also where the neurotypical families of autistic children are divided into those who can accept and cope with the cold facts of autism’s prognosis (and accept and cope with their autistic children as they are, understanding that any extraordinary efforts to change them into neurotypical children could very well cause those autistic children to grow up into autistic adults who blog about neurodiversity and autistics’ rights, or what it’s like to live in a society that frequently treats them like hopeless freaks, or maybe even how terrible it was to endure being the subjects of experimental autism treatments), and those who, for various reasons, cannot.
The Autism Cure Constituency
The pro-cure side of autism’s political spectrum consists of two symbiotic entities; tragic families who need to believe in the hope that their autistic children can be cured, and the people who exploit them, and their autistic children, with questionable science, inspiring yet unverifiable anecdotes, and conspiracy theories.
When a child is diagnosed as autistic, some families go into a state of shock and denial, disparaging doctors and other experts who tell them that autism is incurable, and seeking practitioners who will tell them differently. Such families are usually in mourning for a neurotypical child they believe is “trapped” inside, behind, or under the autism; a conviction which not only keeps them from learning to accept and cope with the autistic children they actually have, but also makes them vulnerable to the specious claims of unscrupulous purveyors, of “alternative” treatments, who purport to have had some measure of success in “recovering” children from autism.
Some families are willing to sacrifice everything, and pay whatever it takes to whoever presents a convincing case for some miracle treatment or cure, which usually involves methodologies the mainstream medical community has either sharply questioned or completely rejected. These unfortunate people periodically become consumed with guilt that they are not doing enough, and/or fear that their child will not progress if they do not completely dedicate themselves to his or her recovery, an endeavor in desperation and futility, which sometimes leads to indebtedness, divorce, alcoholism, and depression.
Today’s medical con artists do not fit the ubiquitous historical image of the 19th century “snake oil salesman,” peddling elixirs out of his horse-drawn wagon. They know that, if they want to make the big money, they will have to appeal to the intellects of sophisticated people who are highly educated. Their literature, which has even fooled a few MDs, contains scientific terminology and selective quotes from valid medical references. Once they convince parents on an intellectual level, it then becomes a simple matter of exuding geniality and confidence while manipulating the family’s wishful thinking, because what these swindlers are ultimately selling is false hope, which can be more addictive than any drug.
The current trend in the pseudoscience of experimental autism treatments administered to live human pediatric subjects is chelation therapy, which has a valid medical use in some cases of heavy metal poisoning (most commonly people exposed to the effects of industrial and laboratory accidents), but is also falsely claimed to be effective against autism, and several other conditions, such as cardiovascular disease, arthritis, multiple sclerosis, psoriasis, and erectile dysfunction.
Chelation practitioners often make the unfounded assertion that autism is caused by lead, mercury, environmental toxins, and/or childhood vaccines that contained thimerosal, a preservative that was discontinued in 2000, mostly due to specious fear mongering that had the effect of frightening parents about having their children vaccinated against dangerous and deadly diseases.
Regardless of the fact that autism is not mercury poisoning (autistic children do not exhibit the peripheral nerve damage or other physical symptoms that are characteristic of mercury poisoning, there is no scientific evidence to support speculation that autism has a toxic cause, and no link between mercury poisoning, thimerosal, and autism has ever been proven with scientific research that withstood the scrutiny of legitimate peer-review) bright and well-read parents nonetheless continue to fall for chelation and give it substantial credit for their autistic children’s developmental progress — despite the fact that, as autistic children mature, they learn new skills and their abilities naturally improve, without any sort of extraordinary intervention.
Autism cure debates are hotly contested in certain circles of cyberspace where all the families want “what’s best” for their autistic children, which is usually the main point of contention. The flames are ignited when those who think it’s best to embrace their autistic children’s unique neurological wiring try to warn parents who think it would be better to somehow “fix” it, that they are wasting their time, energy, and money on false hopes peddled by quacks.
Firm in their conviction that simply accepting autism as part of their children and their lives would be like giving up on the children they feel they lost to autism (and also inferring that they are being judged as rubes), the pro-cure parents respond, with fervent certitude, using their extensive knowledge of pretentiously written, but seriously flawed, scientific literature about discredited and/or untested hypotheses, and experimental therapies that can only be validated by testimonials, and popular conjecture about some ambiguous relationship between vaccines, toxins, and autism.
When autistics and their neurotypical advocates subsequently attempt to lecture these mostly intelligent and well-educated people in scientific methodology, the difference between hypotheses, scientific studies, clinical trials, emerging theories, and accepted theories, and how correlation and causality are not one and the same concept, the pro-cure families respond with their theories about how the international mainstream medical community, and the governments of several nations, in cahoots with the pharmaceutical industry and various and sundry regulatory agencies of the industrialized world, have conspired to hide the “truth,” in which they have so vainly placed their hope and faith.
Lamentably, these debates are mostly unproductive. Regardless of their religious persuasions, most people naturally put their faith in whatever notions or sentiments lend them reassurance and comfort, irrespective of plausibility. When challenges to their beliefs make people feel uncomfortable, it is a matter of the faith and/or doubt in their hearts and minds, but their vanity usually keeps them from contemplating that possibility, thus the flame wars continue.
Paving the Parkway to Perdition
Parents and families who have survived all of the stages of adaptation and learned accept that their children are autistic, and autistic people — whose firsthand perspective on autism should be considered invaluable to any discussion of the topic — want very much to offer their comfort and guidance to families who are struggling with the challenges of adjusting to the knowledge that their children are autistic. They do not intend to make these families feel guilt or shame about their parenting choices (though that methodology is sometimes employed after appeals to reason and logic inevitably fail).
Because it is ordinarily less difficult to get the attention of an autistic toddler engaged in stimming activities than it is to break through the wall of injudicious and tenacious pride that encircles neurotypical people who have become intoxicated with false hopes, some neurodiversity advocates eventually become frustrated and make insensitive, and even hostile, remarks that offend and agitate the people they are sincerely trying to rescue, in the hope that those people might finally wake up and perhaps try to learn how to communicate with their autistic children instead of trying to force them to talk like a neurotypical.
The genuine intent of autistic and neurotypical people who promote the acceptance of neurodiversity is to help people who appear to be having difficulty dealing with the fact that their children are autistic by attempting to convince them that giving up their fight against their children’s autism is not an act of submission or surrender, but rather a simple matter of choosing one’s battles wisely and carefully. Once families understand and come to terms with autism and the realization that their autistic children will grow up to become autistic adults, their lives become less stressful, they save a lot of time and money, and they learn to enjoy life on the autistic spectrum.
Meanwhile, the folks who refuse to give up on their war against their children’s autism do not see themselves as unable to cope, for they truly believe that they are, indeed coping, by taking the initiative, and being proactive and determined to prevail by any means, even if the struggle entails allowing practitioners of alternative autism treatments to conduct medical experiments upon their autistic children. They are not “evil” people, they are loving parents and families doing what they believe is best for their autistic children because they understand the prejudices that people who are “different” must face, and they want their children to have a chance at blending into neurotypical society so that they can attain the happiness, independence, and success most parents want for their children.
Neurodiversity “converts” are hard to win because people must ultimately recover their own reason and rationality from inside, behind, or under their own anguished pride and prejudice before they see the light for themselves. Conversion is seldom a sudden revelation, for most people must first reflect upon the observations they make while traveling the path they have chosen, and contemplate the repercussion and ramifications of their choices over time, before they will be able to see the inconsistencies in the rubric and rationale of those who misled them.
No Autistics Allowed
There is one issue that both the neurodiversity and curebie crowds can agree upon; they do not care very much for the prominent autism charities that have cropped up over the past few years — though each group has very different reasons for their disapproval.
The majority of well-recognized autism charities dedicated to finding the cause and cure are motivated by the sincere altruism of notable and wealthy people, many of whom have autistic children or grandchildren. They tend to stay on the periphery of the politics of autism, and are generally neutral regarding popular speculation about the cause of autism and the efficacy of experimental treatments. The primary mission of these organizations is, after all, to raise money for research into the “puzzle” of autism, not to make claims of having already solved it.
People who believe that they already know the cause of autism, and how to recover their children from it, object to the way that autism charities refer to autism as a mystery, instead of disseminating literature about mercury, vaccines, and chelation (and lobby to get it covered by health insurance). Some even go so far as to accuse these non-profit organizations of being in on the vast conspiracy to hide this “knowledge.”
Meanwhile, autistic people and their neurotypical advocates do not understand why supposed autism “charities” do not appear to be interested in actually helping autistic people, or asking autistic people and neurodiverse families how they feel about autism and what kind of services and support they might need to cope. Autistic people also resent that autism charities do not invite autistic adults to serve on their advisory boards, for they are disabled and they do want and need benefactors who will fund research into how to best educate autistic children so they can reach their full potential, and how to assist and accommodate autistic adults so they can be productive and welcomed members of society.
Instead of reaching out to autistic people, however, these autism charities put up web sites and televise public service announcements that are extremely offensive to autistic people who cannot comprehend how so-called autism “philanthropists” could promote such patently negative images of autism and autistic people.
It is a fact of the economics of human nature that charitable organizations must first elicit pity before that can solicit money. Autism charities looking to raise funds for research into the cause and cure have produced, among other works, documentary-style films highlighting the worst aspects of autism; with loud, chaotic scenes of autistic children screaming, running around in circles, and throwing tantrums, intercut with shots of mothers tearfully telling the camera how difficult and hopeless their lives are. Indeed, raising autistic children presents many challenges that the parents of neurotypical children could not possibly imagine, but it never has to be anywhere near as awful as it is portrayed in these docu-melodramas.
These short movies may raise a lot of money, but they can be very troubling to watch for parents whose autistic children were only just recently diagnosed. A few parents have reported setbacks in their adjustment and coping processes after having viewed these short films.
Some neurodiversity advocates have asserted that these materials are partly to blame when parents are misled into subjecting their autistic children to questionable autism “treatments,” because these promotional devices depict autistics as “unpersons,” whose caregivers could ostensibly be considered exempt from ethical questions about conducting medical experiments upon live human children. A few autistics have expressed that they view autism fundraising collaterals as hateful “autism-phobic” propaganda that features cruel stereotypes, bigoted mischaracterizations, and the specter of eugenics.
The worst part of all this, for those who wish to help autistic people and their families to cope, rather than making people terrified of autism and autistic people, is that the very large autism charities have celebrity endorsements that get far more media attention and airtime for their pernicious point of view than actual autistic people who frequently articulate that “autism cure charities” do not represent, or speak for, them.
April is Autism Awareness Month and I hope that I have made some folks aware that there is a lot more to autism and autistic people than some old Dustin Hoffman movie, and those awful PSAs with the scary statistics (by the way, 1 in 166 is less than 0.5%). There are real people behind those numbers and they do not care for the way autism and autistic people are inaccurately depicted in the media, and how the only autism organizations that are well-known to people outside of the autistic community are charities that don’t appear to be very helpful to autistic people.
The politics of autism will, of course, continue to remain divided as long as con artists and conspiracy theorists can keep long-dead scientific hypotheses alive in the imaginations of families who have experienced great difficulty coming to terms with autism as a part of their lives.
Scientific research into autism is ongoing and new discoveries are being made, especially in the area of genetics. Once more is known about autism, perhaps the lines may be re-drawn, or they could be erased entirely. However, those possibilities currently lie in the distant future. Right now, autism is still a permanent, lifelong disability whose cause is unknown. Some people can deal with that, others cannot; thus the current state of the politics of autism.
(Full Disclosure: The author of the above commentary is a neurodiversity advocate and the neurotypical mother of four children; one diagnosed as autistic, one who is very likely to be diagnosed with Asperger’s Syndrome, and two who are neurotypical.)Powered by Sidelines