Ari Ne'eman
The Autistic Self-Advocacy Network

Dueling Narratives:
Neurotypical and Autistic Perspectives About the Autism Spectrum

Do not cite without permission of the author.

An Introduction

This paper is different from the average piece of academic writing. As an individual on the autism spectrum and as someone who works in an advocacy capacity in my role as the President of the Autistic Self Advocacy Network, it would be both dishonest and counterproductive for me to make any pretense of academic objectivity. My role is not to analyze the construction of autism from on high, providing a painstakingly balanced portrayal devoid of value judgments or harsh language. To do so would be impossible and, to be utterly frank, redundant. There are individuals far more qualified than I performing academic analyses of that type. My background is not in literature or rhetoric, but comes only from my involvement as an active member of and advocate for the autistic community – this being the community of individuals on the autism spectrum, distinct from the more commonly referred to “autism community” of parents, professionals and everyone else. My intent here is instead to be every bit an advocate for the views, goals and especially complaints of the autistic community. This too has been done before. Many people on the spectrum speak up about their personal views about autism at conferences, in popular media and through books, articles and television. In fact, a growing genre of “autiebiographies” boasts many new books a year (“Autiebiography”). But if there is one thing this piece is not about, it is my personal experiences. So then, you may ask, what is my purpose in discussing autism? I hope to explain the biases inherent in the prevailing popular image of the autism spectrum, as defined by family members of autistic children and medical professionals, and explain how these biases have negatively impacted both parents and people on the spectrum.

            I have two purposes in doing this. The first is traditional: to provide new information and analysis to the academic community that will help build a better understanding of an important and growing issue: the autism spectrum, how to define it, what it entails and what to do about its growing visibility in the world today. On this issue, I believe that an insider perspective should be welcome. As I said in recent testimony to the New Jersey Senate Health and Human Services Committee, “We know our own needs better than anyone else. I can assure you that no one knows the autism spectrum better than someone on it (Ne’eman).”

Furthermore, as I will discuss in further detail later in this piece, efforts to define autism without autistic perspectives have been sorely lacking in both respect for the common humanity of people on the autism spectrum and basic accuracy from both a social and a medical perspective. The bottom line is simple: if you are writing about the autism spectrum, you have a moral obligation to consult with, to listen to, to solicit the opinions of and if at all possible to be from the autistic community. This principle is very important in reference to the many individuals and groups whose portrayals of the autism spectrum ignore or trivialize autistic viewpoints – it is also important for those experts who desire to join us in our struggle for a society tolerant of neurological diversity. To make the argument, as we do, that people on the autism spectrum deserve the right to self-determine our own identities and futures, it is both imperative that our words be used as the primary source material and essential that autistics be in the forefront of those advocating this view.

            The other reason this paper serves an important purpose is that the autistic community needs the academic community – even in the seemingly abstract field of literature and rhetoric – to achieve our social, political and practical goals. To quote John Maynard Keynes, “Practical men, who believe themselves to be quite exempt from any intellectual influence, are usually the slaves of some…academic scribbler of a few years back.” We have many things going for us: a compelling ideology in the form of the neurodiversity movement, a growing base of activists through our extensive online infrastructure and budding real world network, as well as an important case to be made at a time when, albeit often for the wrong reasons, awareness of the autism spectrum has never been higher. Yet, to translate these things into effective influence in the realms of public policy and social change, I believe we need to develop our own institutions of theory as well.
The reason I founded the Autistic Self Advocacy Network was to help translate the autistic community’s ideas into practice and communicate them to the wider world. I hope to build upon the work of other self-advocates, such as Jim Sinclair, Michelle Dawson and many others, to create endeavors of social entrepreneurship developing our own body of theory to guide our practical efforts and make our case to the world. We need look no further than the success of the American think tank movement to see how useful supposedly theoretical work can be in effecting broader social and policy change (Demuth). As we discuss the main points of my argument for revising the neurotypical approach to the autism spectrum, I also hope for your comments on how to continue the development of institutions for theoretical discussion within the autistic self-advocate community.

Dueling narratives

      “It was his mind they came for. They came to steal his mind.

    Before anyone gave it a name, even before I knew what it was, I knew it was in our house. I can’t say exactly how I knew. Except that I could feel it. Not that I wanted to. Believe me. They were very, very dark things. And there was no way to get rid of them.

    Sometimes I could hear them, late at night, when the house was very quiet; a creaking sound, an inexplicable hiss, a miniscule pop, a whistle out of nowhere…….

    Night after night, I sat beside his crib. I knew he was slipping away from us, away from our world…..

    And then one day, it happened. He was gone.”

-Portia Iverson, parent and Founder of Cure Autism Now, in her book Strange Son

“You didn't lose a child to autism. You lost a child because the child you waited for never came into existence. That isn't the fault of the autistic child who does exist, and it shouldn't be our burden. We need and deserve families who can see us and value us for ourselves, not families whose vision of us is obscured by the ghosts of children who never lived. Grieve if you must, for your own lost dreams. But don't mourn for us. We are alive. We are real. And we're here waiting for you.

This is what I think autism societies should be about: not mourning for what never was, but exploration of what is. We need you. We need your help and your understanding. Your world is not very open to us, and we won't make it without your strong support. Yes, there is tragedy that comes with autism: not because of what we are, but because of the things that happen to us. Be sad about that, if you want to be sad about something. Better than being sad about it, though, get mad about it--and then do something about it.”

-Jim Sinclair, autistic and Founder of Autism Network International, in ANI’s newsletter Our Voices

Disability has always been a complex thing. In a society that values equality as a means of social justice, the idea of each individual created equal is often misinterpreted as each individual created the same. The concept, advocated by the proponents of a social model of disability, that ability is a function of environment rather than a characteristic intrinsic to the individual is a nuanced one and thus is not easy to internalize. Self-advocates – a term used in this context to describe individuals who identify as having a disability – have long pushed for both support and acceptance throughout society. These efforts, whether aimed at rectifying obstacles against an individual’s inclusion in his or her local environment or at broader inclusion of individuals with disabilities, are designed to effect far-reaching social change against the prevailing view of disability as an unnatural, unacceptable presence in “normal” society. However, the struggle to define disability is not simply one of self-advocates working against the ingrained impulses of a perfectionist culture that does not concern itself with disability. It is one between self-advocates and those who seek to define disability not according to its effect on individuals with disabilities, but on the basis of how it is perceived by those around them. From Of Mice and Men to the Jerry Lewis Telethon, disability and those of us identified as possessing it have been defined only in relation to the rest of society rather than on our own terms. The backlash has given rise to disability rights and culture movements that both cross over disability classifications and possess unique attributes within specific communities. Nowhere is this struggle and its effects more pronounced than the world of autism politics.

Autism, or the autism spectrum, is a neurological condition with wide and varying traits, including disabilities in social and other forms of communication, differences in sensory perception and other characteristics. The term autism spectrum is used to refer to a broad scope of individuals with medical diagnoses including “traditional” autism, or “autistic disorder,” Asperger’s Syndrome, Pervasive Developmental Disorder – Not Otherwise Specified and sometimes other diagnoses such as Rett’s Syndrome and Nonverbal Learning Disability. The particular manifestations of these medical diagnoses vary widely. For instance, some individuals on the autism spectrum display little to no verbal communication skills, while others possess average or above average skills in this area. While it has previously been accepted that the autism spectrum possesses a higher rate of mental retardation than the general population, new studies have begun to call that assumption into question (Association for Psychological Science). The terms, “a person on the autism spectrum”, “an autistic person”, “a person with autism” and “an autistic” will be used inter-changeably throughout this paper to refer to people with the above traits.

The excerpts at the opening of this section are from two individuals who, in very different ways, are each pioneers in the autism world. Portia Iverson and her husband, Jon Shestack, founded the organization Cure Autism Now (CAN), one of the first large-scale, parent organizations raising funds for research to find a “cure” for autism (Bazell). Her efforts since the group’s founding in 1995 have resulted in $39 million directed towards cure-related autism research. She is a minor celebrity in many parent circles and her advocacy work led to the creation of an organization that, prior to its merger with Autism Speaks, had annual income in excess of $10 million (“Cure Autism Now”). CAN has popularized an image of autism as a rising epidemic, laying siege to our nation’s children. The language used to describe CAN’s advocacy is full of martial rhetoric. Following the House passage of the Combating Autism Act, a bill to direct $1 billion to cure-related autism research driven by CAN and Autism Speaks, Shestack announced, “a federal declaration of war on the epidemic of autism.” Speaking of the bill, he stated in a triumphant press release that, “It creates a congressionally mandated roadmap for a federal assault on autism” (Cure Autism Now and Autism Speaks).

The idea of autism advocacy as akin to an assault or ‘War on Autism’ is popular in many parent circles. In this context, autism is constructed as a disease rather than a disability, thereby allowing advocates for research funding to use tactics designed to associate autism with cancer, AIDS and other terminal illnesses rather than the developmental disabilities, such as Down syndrome, it has previously been associated with. This means very different results for how autism is viewed in the public imagination. Autism is viewed here as an external force. While the efforts being made are done in the name of people on the spectrum, there is a strong distinction made between the individuals and their autistic neurology, exemplified by the references to people with autism rather than autistic people. This serves to establish the externality of autism as something that is not pervasive but can be separated from the individual, sending a message to parents that children may one day “recover” from autism and somehow become “normal.” CAN’s rhetoric and awareness work has also been focused almost exclusively on autistic children, largely sidestepping the issue of a substantial population of autistic adults. This is because CAN’s membership consists primarily of parents of young children.

By contrast, Jim Sinclair was one of the earliest autistic adults to speak up publicly about the autistic neurology even before a cultural identity had developed around it. Together with Kathy Grant and Donna Williams, two other autistic self-advocates, Sinclair founded the organization Autism Network International (ANI) in 1992, the first self-advocate run autism group. In 1996, ANI organized the first conference primarily for and ran by autistic adults: Autreat, which remains the largest such conference in the country (Sinclair, “Autism”). While both Iverson and Sinclair have been widely influential in parent and self-advocate circles, respectively, their objectives are radically different, as the aforementioned excerpts show.

Sinclair, who according to the New York Times did not speak until age twelve, played a seminal role in advancing the idea that the autism spectrum in its entirety (including individuals typically referred to as “low-functioning”) should be viewed as a natural and legitimate difference rather than as a pathology to be cured. Sinclair’s landmark piece, “Don’t Mourn for Us” provides a powerful argument against the idea of “cure” and has served as a rallying cry for the growing autistic community. The Autreat web page announces, “Autreat focuses on positive living with autism, NOT on causes, cures, or ways to make us more normal (Autism Network International).” The overarching message of Sinclair’s work – and of the autistic community as a whole – is that there is a need to define autism in terms of what it is, rather than what it is not. Though it is essential to address the disabilities associated with autism, it is a mistake to define the spectrum by them. Writing on why the autistic community has – by and large – departed from the rest of the disability community in avoiding the use of “person-first” language, Sinclair stresses that autism is pervasive: “Autism is part of me.  Autism is hard-wired into the ways my brain works.  I am autistic because I cannot be separated from how my brain works” (Sinclair, “Person First”). It is on that assertion that the neurotypical and autistic perspectives about the autism spectrum diverge.

THE EMPTY FORTRESS: THE FALLACY OF THE MISSING SELF

Despite the wide divide between her views and those of the self-advocate community, Portia Iverson is not the most extreme member of the pro-cure parent camp. The contrast she and self-advocates like Sinclair present is useful, however, because she played a significant role in defining how autism would be viewed in the parent community. In her book Strange Son, Iverson discusses her perspective on her autistic son, Dov, in terms of the panic she felt during the hypothetical ‘onset’ of autism. “Dov was only a baby and something was trying to steal him away,” she writes. Autism, as a genetic condition present from birth, can hardly suddenly arrive to “steal” a child, yet this is the perception of many parents who are ill equipped to handle the first manifestations of the more noticeable autistic characteristics at approximately eighteen months (“Does the MMR Vaccine Cause Autism?”). Later, when describing her observations of Tito Rajarshi Mukhopadhyay, an Indian nonverbal autistic who communicates primarily through writing, she uses phrases like “possessed by a demon” and “wild beast” to communicate her perception of him (Iverson). These and other comments reflect a broader tendency on the part of these parents’ to define autistic individuals on the basis of their perceptions of autistics, rather than by objective characteristics. This bias is hardly recent or limited to one woman.

Dr. Bruno Bettelheim is famous (and infamous) in autism circles as the originator of the “refrigerator mother” theory of autism causation, stating that autism results from mothers who were cold towards their children. Bettelheim’s theory has since been disproved and much of the work done by both parents and self-advocates since has been to reverse the view that autism is a psychological rather than a neurological condition. However, at the time of its publication the “refrigerator mother” hypothesis was the predominant viewpoint on the causation of autism. In his book The Empty Fortress, Bettelheim opens by stating that, “Much of modern psychology seeks to know about others; too much of it, in my opinion, without an equal commitment to knowing the self. But I believe that knowing the other—which is different from knowing about the other—can only be a function of knowing oneself." This quote is highly indicative of Bettelheim’s approach towards autism research. The reason that he came to believe that mothers were at fault related to the perception that the autistic children he treated behaved in a fashion empty of any human self. Beginning from this questionable starting point, he sought to project his own experiences as a prisoner in the Nazi concentration camp of Buchenwald. In the eyes of his autistic patients Bettelheim, “recognized a terror that he himself could never forget—the terror of someone placed in an environment that seeks to destroy him without his knowing why or whether he will ever escape” (Sutton). Using his own experiences as the foundation for his ideas about autism, he theorized that autistic children were responding to a lack of emotional contact from their mothers by rejecting their sense of selves. Unsurprisingly, given his methods, he was dead wrong. Thus began a long and damaging history, both of defining autistic individuals primarily by how they compare to neurotypical individuals and of utilizing highly inappropriate and offensive metaphors to suggest that people on the autism spectrum lack a sense of self, or even an authentic self. The overarching message of most portrayals of the autism spectrum and the people on it reflect a tragedy that robs humanity, leaving behind something –someone – that must, implicitly, be sub-human.

In the present day, the “missing self” canard – as well as defining the spectrum in reference to others rather than those actually on it – is ubiquitous in autism discussion. Jon Shestack, Portia Iverson’s husband and the co-founder of Cure Autism Now, writes, “This is the special curse of autism. You have your child, and yet you don’t have him. You have a shell, a ghost of all the dreams and hopes you ever had” (“More Can Changeling Rhetoric”). “I want my grandson back,” announces Bob Wright, the founder of Autism Speaks, a major organization devoted to finding a cure for autism (Wright). “I had a perfectly normal baby. He hit all his developmental landmarks but after his first birthday… My baby had been stolen away from us," states a mother of an autistic child. (“Autism Spectrum Disorder Research Program 2007”). One autism parent memoir considered a “classic” – The Siege by Clara Claiborne Park – uses the “autism as child-thief” metaphor at length, referring to the birth of an autistic child as akin to myths of fairies stealing babies in the night, only to replace them with mimicked shells of their former selves (C. Park). To quote Dr. Mitzi Waltz, a lecturer in Autism Studies at the University of Birmingham, “This metaphor is redolent of changeling myths, which may represent the oldest legends concerning autism as such. In these stories, the changeling must be killed, beaten, or abandoned, or the correct spell must be said, to force the return of the “real” child it replaced” (Waltz). Unfortunately, the acts of killing, beating, abandoning and even searching desperately for the correct “spell” to “cure” autism and thus return the hypothetical normal child are all too common amongst parents of autistic children, as they continue to play out the only autism paradigm most have ever known: a pyrrhic quest for a non-existent cure. This topic deserves further elaboration: what effect does the concept of cure have on parents who are reluctant to face the reality that the child born to them is different from the child they desired?

One common response to the rhetoric of tragedy surrounding the spectrum is to seek to place the “blame” for autism on a particular party or group.  In 2007, Dr. Larry Needham of the Center for Disease Control (CDC) spoke on “Autism Spectrum Disorders”, mentioning thimerosal in vaccines as one of the many chemicals “linked to ASD” in the eyes of parents and activists. Clarifying his remarks in correspondence, Dr. Needham stated that, “I included thimerosal because it has been a focus of concern for some groups. I did not make any assertion…that any of the six chemicals I listed, including thimerosal, had been proven to have a causal link with autism spectrum disorder” (Needham). CDC studies on the topic came to the same conclusion that research conducted by the Food and Drug Administration (“Mercury and Vaccines”), the World Health Organization (“Thimerosal and Vaccines”) and other mainstream medical research institutions had reached: that the evidence linking thimerosal and autism was scant, to say the least. Nonetheless, anti-vaccination activists produced Dr. Needham’s slides as showing that a CDC expert confirms “a direct causal link between mercury exposure from Thimerosal-preserved biological products and mercury poisoning diagnosed as an autism spectrum disorder” (“Thimerosal Linked To Autism”). Doing so continued a pattern of seizing on little evidence to advance a theory of autism causation that implicated pharmaceutical companies as the ‘perpetrators” of autism on families. As Bettelheim blamed parents, so some parents now blame modern medicine, claiming that it was vaccination that caused their children’s autism. One can see, in this approach, a certain desire for vindication after Bettelheim’s accusations, as if parents are asserting, “Don’t you see? It was medicine all along. We weren’t at fault – the doctors were.” One way or another, the blame must be placed.

Generation Rescue, one organization promoting the idea that autism is caused by thimerosal in vaccinations states in its mission statement that, “Our children are experiencing epidemics of ADD/ADHD, Asperger's, PDD-NOS, and Autism… We believe the primary causes include the tripling of vaccines given to children in the last 15 years (mercury, aluminum and live viruses); maternal toxic load and prenatal vaccines; heavy metals like mercury in our air, water, and food; and the overuse of antibiotics” (Generation Rescue). Many parents blame thimerosal and vaccines for far more than autism, with one medical process patent promising a treatment to facilitate recovery from, “autism, autism spectrum disorders, ADD, ADHD, mental retardation, Asperger’s syndrome, childhood psychoses, stammering, stuttering, tics, repetitive movements, eating disorders, sleep disorders, enuresis, disturbances of emotion, developmental language disorders, developmental speech disorders, developmental delay, and other related disorders” (“Patent Medicine”). In the eyes of these parents, autism and countless other neurological differences are the result of an epidemic caused by the pharmaceutical industry – the latest target in the rush to place the blame for autism. In the places where these individuals congregate, conspiracy theories abound and those who question the legitimacy of thimerosal as the cause for autism are accused of being in league with, “Big Pharma”.

Just as the Internet has served as a means for people on the spectrum to develop a common culture and political movement, listservs and Internet forums serve as homes for those who subscribe to the thimerosal causation theory about autism. The focus on blaming someone for the presumed tragedy of autism is very clear in this medium. Particular vitriol is saved for those who disagree with their proposed “cure”: a biomedical treatment called chelation that was originally intended to treat heavy metal poisoning. To quote one parent responding to a post by a father sympathetic to the self-advocate perspective, “if you remain in denial you don't have to extend yourself or take responsibility to heal your child because it is so much easier to blame "bad genes" and accept your child's fate…That is a COP-OUT. Your child deserves better. Get off your lazy bum and start to heal the biomedical problems of your child!!” Another response read, “It seems apparent from reading your reply there is a history of serious psychiatric illness in your family. My apologies” (Seidel). Mainstream autism organizations that do not support the idea of autism as a form of mercury poisoning are also attacked at length, as are the majority of medical researchers, parents who do not share the thimerosal causation view and self-advocates who protest the use of chelation – which has proven lethal for a number of children – as well as the end goal of “curing” autism. The common theme throughout the discussions of this section of the autism community is simply blame, regardless of who or what is under discussion. The focus on identifying approaches to autism only through the prism of looking for some individual or group to blame for it is unhealthy on many levels, from the toxic atmosphere of discussion it spreads to the highly questionable treatments it leads parents to apply to their children. However, this phenomenon does not represent the most concerning result of “missing self” rhetoric in the autism community.

In May of 2007, Dr. Karen McCarron asphyxiated her daughter, Katie McCarron, with a plastic garbage bag, then brought her dead daughter home to her bedroom (“Mother kills”). In 1997, Janine Albury Thomson of New Zealand drove her 17-year old autistic daughter, Casey Thomson, to a bridge and waited for her to jump off. When she refused, saying only the word, “cold”, Janine drove Casey to a quiet street and strangled her with her dressing gown (Park) In November of 1996, Danielle Blais drowned her six-year old, autistic son, Charles Blais, in the bathtub of their Montreal home. (Park).

Speaking about Karen McCarron, the legislative director of the Autism Society of Illinois said, “Karen's feelings of isolation and despair are the norm, not the exception (Hayes).” Speaking to police, Janine Thomson said of her daughter, “"She was a misfit. People were scared of her because she was different... I wish it could have been quicker. I'd wanted to kill her for a long time. She didn't die quickly, and I held on tight (Park).” Speaking to the Montreal Gazette, Peter Zwack, President of the Quebec Autism Society announced that Ms. Blais should not face first-degree murder charges and should not see jail time. "Her life was a nightmare. She was all alone and that would have made things more impossible," said Zwack (Council of Canadians with Disabilities). The Autism Society of Greater Montreal provided a legal fund and court testimony in support of Ms. Blais at trial (Dawson).

Dr. Karen McCarron has pled not guilty to the murder of her daughter Katie, and currently awaits trial. Janine Thomson was initially convicted of manslaughter for the death of her daughter Casey, and sentenced to four years imprisonment; after a public outcry, she was released after five months, returning to her two other children (Park). Danielle Blais was convicted of manslaughter for the death of her son, Charles, and did not serve any jail time. After her trial, the Autism Society of Greater Montreal hired her as a fundraiser (Hayes).

These incidents – and the appalling response to them – are not isolated; they are not new and they are not going away. Numerous children with disabilities, particularly those on the autism spectrum, are killed by their parents every year (Smith). While exact numbers are not available, it can safely be said that there are far more than those few that reach the public eye on an annual basis. There exists substantial support for the idea that the murder of autistic children – and adults – is justifiable and constitutes a form of “mercy killing” that should be met with leniency and even encouragement. To quote Professor Richard Sobsey, Director of the JP Das Developmental Disabilities Center and the John Dossetor Health Ethics Center at the University of Alberta, “Society has constructed a myth that says it's OK, or at least not really too bad, to kill these children…. Two-thirds of all murdered children are killed by their own parents. Virtually all parents who kill their children are under great stress for one reason or another. If stress, lack of support, or concern over the child's future is an excuse for killing Casey [Thomson], we'd better be prepared to excuse every other parent who kills his or her child. If not, we're just putting less value on the lives of children with disabilities (Park).” Even in such a climate, these incidents seem chilling. But should they be so surprising in a context that tells parents that death is preferable than life on the autism spectrum?

Before the murder of Katie McCarron, a new fundraising video was released by Autism Speaks at a New York City fundraiser called A New Decade for Autism. That video’s title is Autism Every Day. Opening to the sound of somber music and childrens’ screams, the video purports to show the true reality of the lives of mothers of autistic children. One of the mothers featured in the film was Alison Tepper Singer, Executive Vice President for Communications and Awareness at Autism Speaks, alongside her young autistic daughter, Jody. In her segment, Ms. Singer announced, “I actually contemplated putting Jody in the car and driving off the George Washington Bridge. It’s only because of Lauren, the fact that I have another child, that I did not do it.” In the background, Jody can be heard saying, “What are you doing?” as she wanders around the room before stopping to look out the window. Autism Every Day premiered on May 9th (Autism Speaks). Katie McCarron was killed by her mother on May 13th, four days later.

Autism Speaks broadcasts several television public service announcements informing us of the odds of a child achieving any one of a number of improbable events – starring in a Broadway show being one example – as compared to the much more likely odds of the viewer having a child with autism (Ad Council). The intended effect is clear. It is a call for parents to be afraid: if you dream for your children, if you aspire for them to achieve great things, then you should also fear for them – and donate to research for a “cure”, lest the tragedy of autism take your child too. What is the result of following the fallacy of the missing self and the accompanying tragedy narrative of autism to its logical conclusion? If autistics are changelings – children not of this world and subject to the unspeakable presumption of tragedy that our modern media perception of autism is based upon – is it a surprise that some parents should try and excise the changeling, remove the cancer and thus end the tragedy they view themselves as playing a part in? To those parents, who have been conditioned to believe that their children are less than whole and thus less than human, are they performing a true act of murder? A causal relationship exists between the rhetoric that reinforces a diminished value for autistic life and personhood and the implementation of that idea in the form of the murder of people on the autism spectrum.

“Uncle Bruce” and “Sister Mary”: Children of the Fallacy of the Missing Self

As can clearly be seen in the opening to Strange Son, Portia Iverson took inspiration from this characterization of the autistic as a changeling child, replacing the normal child that was “stolen away” by autism. The effects of this outlook are evident in the strategy and marketing of Cure Autism Now, its successor Autism Speaks, and other autism groups. But what are its consequences on autistics, the supposed beneficiaries of these efforts? Is it possible to help people on the autism spectrum by demonizing them? Writing in the Ragged Edge magazine, Cal Montgomery, an autistic self-advocate, describes how the stereotypes placed upon autistics by the neurotypical world affect her:

“As I move through my life -- a disabled person -- two companions haunt me. They are imaginary, but in my dealings with other people, they are forceful….One I think of as an uncle. A descendant of Carrie Buck, of the Jukes and the Kallikaks, a cousin to the Rain Man and the wild children of the forests. You've seen him rocking in the corner, headbanging. He cannot speak and, people assume, has nothing to say…Violence swirls around him: sometimes he is a target, sometimes a perpetrator, sometimes both. He is an enigma, interpreted by others: he cannot define himself. He embodies the stereotypes, the paradigms of cognitive impairment, of my own particular set of labels. He's no different from me -- but he is. Get me in the right situation, and we look exactly alike. Get me in the right situation, and you can see no resemblance. Bruce, I call him in intimate moments, after a caricature I once saw on television.

The other I think of as a sister. A shadow twin. The daughter my parents wanted in my place, pretended they had. The sister my flesh-and-blood sister wished for. Me, but with impairment denied, defused, removed. Me, but with grace, stamina, social skills. She speaks for herself -- then again, she doesn't have to. She's no different from me -- but she is. Get me in the right situation, and we look exactly alike. Get me in the right situation, and you can see no hint of resemblance. Mary, I call her, after the aunt whose other name I was given (Montgomery).”

The duality presented here by Cal Montgomery shows two of the most damaging stereotypes resulting from the rhetoric surrounding autism. The first, represented by “Uncle Bruce”, is the quintessential “rocking in the corner” autistic stereotype that states that all autistics are nonverbal, incapable of communication and destined to live forever in the most tragic of possible circumstances. Montgomery talks about the pressure to separate from the ‘Bruce’-like characteristics of her neurology: “I am encouraged to disassociate myself from my uncle Bruce…People suspect, believe, that segregation, exclusion, institutionalization, may be best for him, for others. Best for that nebulous us. Bruce, they believe, would never participate in disability politics. He'd never be able to. But he represents impairment.” The caricature that Montgomery describes here is two fold. The first effect of “Uncle Bruce” is the belief by many educators, professionals, parents and unaffiliated individuals that to have a diagnosis of being on the autism spectrum automatically necessitates an inability to live independently, hold a job, attend higher education or communicate effectively. While many people on the spectrum do have significant difficulties in those areas, many of us succeed and even excel in those fields. For those of us who are seeking full inclusion in society, a presumption of inability is both damaging and offensive.

The second aspect of this caricature is the pressure that many people on the spectrum face to try and pass for normal and the attempts by people on and off the spectrum to disassociate those autistics who have succeeded in achieving some measure of success in neurotypical society from those who have not yet done so and may be seen as unable to. To quote an article by one mother, criticizing a neurodiversity advocate on the spectrum for speaking out against behavioral treatment methods, “she is not at all like my children, or any of the children I know who have autism (Association for Science in Autism Treatment).” Even the very well known autistic self-advocate Temple Grandin, who holds a diagnosis of “high-functioning autism”, has stated that her opposition to a cure for autism extends only to individuals characterized as “high-functioning” or Asperger’s. Criticizing her, Amanda Baggs, an autistic blogger with a “low-functioning” diagnosis who communicates primarily through typing and other forms of assistive technology, states, “So, as far as I can tell, the only reason she wants people like me around at all, is because we’re genetically related to people like her and people like her are useful to society (Baggs).”

In her article, Montgomery calls attention to a website that illustrates a counterpoint to the “Uncle Bruce” perception of autistic individuals called “Getting the Truth Out”. The website, created by an autistic woman who uses alternative communication tools (such as typing) as her primary means of communication, starts in the mold of the traditional neurotypical-centric approach to autism, showing pictures of an autistic woman in a variety of poses with captions such as, “They say that there is one autism diagnosis every 20 minutes…Parents are devastated… She can't speak, so this website is speaking for her and many others like her. (Getting the Truth Out)” As the viewer clicks forward on the site, the message drastically changes. The person in the picture is shown holding a sign reading, “I am not a puzzle, I am a person,” referring to the puzzle piece symbol used by the Autism Society of America and Autism Speaks to symbolize neurotypical autism advocacy. She wears a shirt reading, “Not being able to speak is not the same as not having anything to say,” a popular slogan of the Alternative and Augmentative Communication (AAC) community, which uses various tools to provide alternative means of communication for those who do not communicate verbally. The message has shifted, with the new caption reading, “If the Autism Society of America were making this website, they would not mention that in the entire way she lives her life she is trying to say: “‘NO! This is not who or what I am! I don't want you using my image this way, I will not be portrayed as lesser, and I will not have my life medicalized this way so you can fund the elimination of autistic people from the planet.”

The woman is, in fact, the author of the website, and as the viewer resumes clicking through the pages, each picture shown before is viewed again with captions from the author about her own perspective on her life. “This is what I look like when I'm trying to relax, or zone out a little, or shut off vision so that I can hear what is going on around me. [But] I have no doubt that someone could use this image to show the tragedy and despair inherent in autism… Black-and-white images such as these, and the captions that go along with them, are designed to create a reaction. Most often, disability organizations, run by non-disabled people, use them to elicit pity — and money. At the expense of the truth (Getting the Truth Out).” “Getting the Truth Out” is a condemnation of the simplistic and inaccurate view of autistics as voiceless tragedies – it serves as a powerful example of the autistic community’s rejection of the “Uncle Bruce” caricature of its members.

At the same time as many autistic self-advocates are fighting against being perceived like “Uncle Bruce”, the pressure to be “Sister Mary” can be almost as frustrating. Parents often believe that hiding beneath the perceived wall of autism is a neurologically typical individual waiting to come out: “Mary” is this hypothetical person. Implicit in each complaint about a child or adult’s autistic characteristics relative to what is normal is a desire for an individual without those traits, for a normal, neurotypical person. Intrinsic in that desire is a rejection of the individual who does exist, for the one who could be. This is the end goal of cure, after all: a normal, “whole” person without autism. “Mary” is in the background of every discussion about autism and not only in the desire to cure it. Asperger’s Syndrome is often referred to in the media as “mild autism” in that those of us with that diagnosis typically display verbal skills on par or superior to those of our neurotypical peers (Herera). This too is a manifestation of the perceived superiority of neurotypical way of being. Asperger’s is considered to be milder than other forms of autism because those with this diagnosis share more similarities with neurotypical individuals than those with what is considered to be traditional autism.

Still, when Montgomery talks about the pressure to be like “Sister Mary”, I can relate. I cannot count the number of times I have been praised for “overcoming” being on the autism spectrum – I usually respond by saying that the only thing that I have overcome is the perception society has of me. Strangely enough, I am more insulted by the compliment than I am by any criticism I have received for my eccentricities. Both attack who I am; the latter, at least, is more honest in its assault on my being. If I am being complimented by how far I have “risen” above the supposedly inferior traditional forms of autism, what am I supposed to be rising to? Neurotypicality? This hierarchy of neurology still leaves me as an inferior class, even if I were to accept the argument made by its proponents: that my exceptional abilities in some areas mean that I should separate my identity from those who require more support. The reasons for rejecting the attempt by some on and off the autism spectrum to separate Asperger’s and “low-functioning autism” is not just out of loyalty to our autistic brethren who would be ill-served by being compartmentalized into the latter category. It is recognition that the acceptance of that ranking denigrates even those who are perceived as “high-functioning”. Rather than just gaining a jump in status over those considered “lower-functioning”, we would prefer to hold out for a true recognition of the legitimacy of neurological diversity.

Autism vs. Autistic Communities: Who Owns “the Voice of Autism”?

Writing a critical review of Charlotte Moore’s memoir of her two autistic children, author and grandmother of an autistic child Carolyn See states,

…Moore knows, twice as well as I do, that precisely because autistic kids don't much notice or care about the outside world, autism actually "happens" to the sentient human beings around them. The heartbreak, the drastic realignment of expectations, the fury, the terror -- even the fleeting moments of elation or amusement or solidarity in the face of insurmountable weirdness -- happen to the parents and the siblings (See).

            On her blog, Amanda Baggs types in response: “So, according to this, autistic people don’t actually experience being autistic. Our experience is not only irrelevant, it isn’t there, at all. We aren’t sentient human beings, only those around us are. We don’t experience the bad things that happen to us, only those around us do. We’re, I’m guessing, empty shells or something? (Baggs)” Her frustration is understandable. Like those with many disability classifications, autistics have suffered and do continue to suffer incredible and shocking brutality – ranging from lethal restraint and quack treatments to electric shock and beating as a means of behavior modification accepted by the medical and educational communities surrounding autism. Yet, despite this, the autism narrative is almost exclusively about family members and their suffering. Why is this the case?

Representation is established by who can claim control over the narratives used to define a person, place, experience or term and the parent narrative about autism has had far more time to disseminate than the self-advocate one. By stating that autism only happens to those surrounding the autistic, See places the power to define autism and thus to speak on behalf of both autistic individuals and their families in solely non-autistic hands.  In the discussion about autism, autistics are generally off-stage characters, referred to constantly, invoked with great passion and pomp, but not fit to offer any lines of actual dialogue. The communication difficulties that many autistics face clearly play a role in why the autistic perspective is not recognized in the popular narrative surrounding autism. Parents began to form a self-aware community far before self-advocates did and thus had a head start on reaching the public. It is the natural inclination of every group that wishes to communicate its “victim” status to attempt to monopolize public perception of relevant issues with their narrative and to resist attempts to go off-message in the telling of “their” story.

But the exclusionary claim to the narrative of autism’s effects is undertaken in defiance of much evidence to the contrary from parents, not just self-advocates. The denial inherent in the statements made by See, Iverson and other cure-oriented parents is made all the more curious by the fact that it goes against their own observations of their children. See talks about her grandson’s habits, saying that he “spins necklaces for as long as anyone will allow him, runs or swims for hours at a time and vocalizes in the clear, haunting voice of an avant-garde composer (See).” Neither she nor Iverson are cold towards their children, despite their offensive rhetoric. They describe even their autistic traits in positive as well as negative lights, as See’s mention of her grandson’s singing –a clear sign of echolalia – shows. So why do they persist in demonizing autism as an exclusively negative force  – not to mention marginalizing the autistic narrative of autism?

Once again, the answer to this phenomenon can be found by looking at the policy of evaluating autistics on neurotypical terms. It leads to the belief that the eventual goal of all autism advocacy must be finding a cure and thus the idea that any positive discussion of the spectrum diverts valuable public awareness and fundraising support away from that goal while any negative discussion of autism contributes to it. This was the motivation behind the Autism Every Day fundraising video. Commenting on why she chose to make the movie, producer Lauren Thierry criticized President Bush for being photographed with a young man on the spectrum who received positive media attention for scoring repeatedly during a high school basketball game, “The message Bush is sending is: Why give funding when all we have to do is find a skill they're really good at (Liss)?” As the article her interview is included in puts it, “Stories like these send out a mixed message. Are autistic people all "Rain Man" types who possess extraordinary, superhuman talents? Or is autism a horrifying and incurable condition that pushes families to the edge?” If these are the only two options, then it is obvious why so many parents view autism representation as a zero-sum game: any positive attention about autism or autistics takes away from the hoped-for public pressure for a cure. By portraying people on the spectrum as tragic and all aspects of autism as horrible, more fundraising dollars can be raised. For this reason, Thierry asked the mothers in her film to avoid maintaining their homes or providing any form of therapy for their children in the days prior to filming. The more desperate the parents appeared, the better the film would fulfill its purpose (Liss). That this ignores the reality of most autistic people – who are neither “Rain Men” nor tragedies – is irrelevant to the ends sought by Autism Speaks and its fundraisers.

It is because of these conflicts over means – such as the desire to raise money for research versus the objections made against misleading or offensive imagery – and over ends – such as the conflict between cure as opposed to acceptance – that there is such struggle over who can claim to speak for autism. The Autism Society of America (ASA) bills itself as “the voice of autism” (Autism Society of America). The popular self-advocate site Autistics.org calls itself “the REAL voice of Autism” as a means of criticizing ASA (Autistics.org). Meanwhile, parents and self-advocates continue to do battle unnecessarily, given the positive contributions each can make to the other group’s individual and collective goals.

            In this vein, I would like to encourage my own community to think strategically about how to approach the divide between the autism and the autistic community. To drain the swamp of toxic rhetoric from the cure-oriented autism community, we have to pursue two distinct but equally important tracks. The first is to continue to condemn language and advertising that implicitly endorses eugenics. By identifying the results of the culture of despair groups like Autism Speaks spread, we can better capture the attention of the public and turn it against the idea of cure and its proponents, thus moving Autism Speaks outside of the accepted mainstream of public discourse. This is the approach that many disability rights and other civil rights groups have taken in the past. However, while it serves as a useful means of combating those groups and individuals that already employ damaging rhetoric against the autistic community, it fails to address the reasons why those groups exist in the first place. As a result of this, it lacks an effective “end game” and, pursued in isolation, will at best lead to a stalemate between the autism and autistic communities. Given the relative financial, political and public relations strength of the cure-oriented autism community, a strategy to address the root causes that lead parents to align themselves with groups like Autism Speaks is needed, for both tactical and moral reasons.

            The first step in doing that is to advance a positive image of the autism spectrum, as well as combat the negative one. How can this be accomplished? The developing autistic culture has provided us with a powerful start in asserting that while being on the autism spectrum comes with many disabilities, it also includes benefits and neutral differences, as is the case with any neurological type. Unfortunately, the political and cultural battles that the autistic community has had to undertake in order to establish the legitimacy of our narrative and perspective on our own neurologies have defined us in large part by opposition. This means that we run the risk of making the same mistake our opponents make in constructing autism by what it is not as opposed to what it is. Yet despite the necessity of showing what the autism spectrum actually is, there is a gap between knowing that – as each individual on the spectrum does in so far as their own personal characteristics – and communicating that in a cohesive fashion both to the world at large and even within our own community. In this respect, we are hardly alone. Every community struggles with how to define the traits that identify an individual as a part of them, as the many discussions on what it means to be Jewish or African-American or, relating it to the disability context, deaf show. Our struggle to define what it means to be autistic is even more complicated, despite the fact that autism is less of a social construction than classifications that are defined by more superficial departures from the hypothetical norm. This is because, while they remain very real in highly objective terms, the neurological differences that define autism exist within the brain and are not readily observable. The autism spectrum in its many variations is an “invisible disability” and so we have to work to be able to define what it really is to those who are not autistic or who are not intimately familiar with someone who is.

In many respects, the best way to solve this problem is to increase the quality of life for families and individuals on the spectrum by improving support for both. As the social model of disability shows, individuals suffer from disability when the environment around them is not made accessible and accommodating. There remains a long way to go to achieve that goal in reference to the autism spectrum. By promoting Assistive and Augmentative Communication (AAC) technologies, we can work towards a future where every autistic has the ability to communicate effectively. By improving special education and funding for transition and adult supports, we can reduce the perceived and actual difficulties on families. These strategies and many others are not at all unique to the autistic community; they match with the autism community’s goals as well. However, the purposes for pursuing them are that they both improve quality of life for autistics and create an environment in which families are not as likely to be drawn to cure-oriented groups that preach offensive rhetoric.
It is ironic in some ways that parents and self-advocates should be so divided, as that they do share many goals for public policy and social change. It is the rhetoric of the autism community – as well as its upside down perception of the self-advocate narrative as secondary to the parent one – that divide the two groups. The autistic community recognizes the grieving process that parents go through after receiving their children’s diagnoses and learn that the life of an autistic individual can be very different from what parents expected for their child. However, that grieving process must end in time. Without that recognition, the autism and autistic communities will continue to clash while the duel between the self-advocate and parent narratives continues on – to the great detriment of both groups.

“The tragedy is not that we're here, but that your world has no place for us to be. How can it be otherwise, as long as our own parents are still grieving over having brought us into the world?” –Jim Sinclair, Our Voices

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