Historicizing Jim Sinclair’s “Don’t Mourn for Us”: A Cultural and Intellectual History of Neurodiversity’s First Manifesto
Jim Sinclair’s 1993 essay “Don’t Mourn for Us” has influenced the neurodiversity movement since its publication. Sinclair’s essay stands out as particularly radical when considered within the context of other autistic writings from the 1980s and early 1990s. While writers such as Temple Grandin and Donna Williams introduced mainstream audiences to the concept of autistic people narrating their own experiences, their works still relied on ableist ideas about autism promoted by non-autistic scientific “experts” and parents. They positioned autism as a tragedy. Sinclair, who was very familiar with parent-centric autism culture, upended those notions by challenging the notion that parental grief was the inevitable result of autism. In doing so, Sinclair played a major role in establishing the intellectual and cultural foundations of neurodiversity.
In reviewing the intellectual history of neurodiversity, Jim Sinclair’s 1993 essay “Don’t Mourn for Us” stands out as almost singularly influential . The essay was first published in the third-ever issue of Our Voice, the newsletter of Autism Network International (ANI). Sinclair, an ANI co-founder, based the essay on a presentation xe delivered at the 1993 International Conference on Autism in Toronto. The essay implored parents not to mourn for their autistic child’s disability, but rather to embrace their child’s differences and work to meet their needs.
Even nearly thirty years after its original publication, “Don’t Mourn for Us” remains a touchstone for the neurodiversity movement, cited in both casual conversations on social media as well as more academic pieces offering cultural commentary and criticism.
The essay has served as a springboard for conversations about parental expectations in the context of an autism diagnosis. Many autistic people and parents cite the piece as leading them toward a path of self-acceptance [2, 3]. A few activists have critiqued Sinclair for not going far enough . Conversely, some parents have criticized Sinclair for an alleged failure to understand their perspective [5, 6].
As a historian, I am less interested in arguing about the correctness of Sinclair’s views here—although as an autistic person and advocate for neurodiversity, I agree with them. Rather, I’d like to illuminate the historical context of “Don’t Mourn for Us.” This piece will explore how Sinclair’s work fits into the broader history of autistic people’s advocacy and public speech.
In the interest of full disclosure, I don’t just come at this from the perspective of a historian. I attended the event Sinclair founded, Autreat (ANI) in 2008 and 2010. While in attendance, I briefly met Sinclair. Currently, I am the chairperson of the Association for Autistic Community (AAC). We sponsor an autistic community retreat, Autspace, that continues many of the same traditions of Autreat (which met for the last time in 2013). These experiences have undoubtedly shaped my perspective on “Don’t Mourn for Us” and Sinclair’s place in the neurodiversity movement, though this piece is primarily intended as a historicization of Sinclair’s body of work.
To historicize “Don’t Mourn for Us,” I will begin by looking at Sinclair’s contemporaries. The mid-1980s and early 1990s saw some of the first published writings by autistic people in the English-speaking world, including the works of Temple Grandin and Donna Williams. By looking at Grandin’s and Williams’ writings, we can better understand the radicalism of “Don’t Mourn for Us.”
Within this context, I will then analyze Sinclair’s intellectual evolution as seen through xyr public writings. Finally, I will suggest how Sinclair and “Don’t Mourn for Us” have shaped the neurodiversity movement since 1993—and how the movement has developed since.
Autistic Writings and the Neurotypical Audience
The first autistic people to write for a wide English-speaking audience were Temple Grandin and Donna Williams. Grandin’s autobiography, Emergence: Labeled Autistic was first published in 1986 by Arena Press, and Williams’ Nobody, Nowhere, was first published in Great Britain in 1991 and in the U.S. in 1992. Nobody, Nowhere became an international bestseller.
Both memoirs were radical in the sense that they introduced neurotypical audiences to the idea that autistic people could narrate their own experiences and had rich internal lives. Yet they were written for a neurotypical audience, and that shaped numerous aspects of the books’ publication and content.
Grandin, who was born in the U.S. in 1947 and raised in an affluent white family, enjoyed several privileges that many autistic people of her generation lacked. She was not, however, diagnosed as autistic until she was a teenager. Her initial diagnosis was “brain damage,” which likely saved her from being institutionalized as a child (Silberman ). However, Grandin was somewhat elusive on this point in the book’s narrative. As the title suggests, Emergence presents the narrative that Grandin was able to “emerge” (or recover) from autism.
Although this is not made explicit in the book’s text, Margaret M. Scariano was listed as a co-author of Emergence: Labeled Autistic. Scariano’s role in shaping the book is unclear, although Grandin has since authored many published works as sole author. I have not been able to find much information about Scariano, although one 2013 obituary states that she wrote or co-wrote a number of books, including both fiction and nonfiction . But while the circumstances behind Scariano’s contributions remain ambiguous, the book’s promotion of a “recovery” narrative is clear. In my analysis of Emergence, I have chosen to focus on this issue rather than the complexities of the book’s authorship.
This emphasis on recovery is made explicit in the book’s introduction, written by noted autism scientist Bernard Rimland (Rimland became famous for debunking the refrigerator theory of autism causation). In the introduction, Rimland recounts his acquaintance with Grandin, reassuring readers that she was “really” autistic—or, in his terms, “a recovered autistic individual” (Grandin & Scariano ). Rimland, who later became an advocate of dubious biomedical “treatments” for autism, gushed about Grandin’s ongoing recovery in the introduction. The memoir’s framing hence implicitly became something of a how-to guide for autism recovery.
In addition to Rimland’s introduction, the book also includes a preface from William Carlock, who taught Grandin at a private school as an adolescent. These two introductory pieces served the function of “proving” Grandin’s autistic status to a skeptical audience, while simultaneously suggesting that recovery from autism was both possible and desirable.
Mother, who was only nineteen when I was born, said she remembers me as a normal, healthy newborn with big blue eyes, a mass of downy brown hair, and a dimple in my chine. A quiet, ‘good’ baby girl named Temple.
If I could remember those first days and weeks of life, would I have known I was on a fast slide slipping into an abyss of aloneness? Cut off by over-reactions or inconsistent reactions from my five senses? Would I have sensed the alienation I would experience because of brain damage suffered as an unborn child—the brain damage that would become apparent in life when that part of the damaged brain matured? (Grandin 2005)
Significantly, Grandin did not actually remember any of the events recounted here, since they purportedly occurred when she was a mere six months old. Rather, she created this narrative using her mother’s memories and a paradigm of autism in which autism entraps autistic people into a world of isolation and misery.
Although Grandin did not take a firm stance on the always-contentious issue of autism causation, she was quite unequivocal in suggesting that autism was a tragedy not just for her, but for her entire family. The very first line of Grandin’s own text stated, “I remember the day I almost killed my mother and younger sister, Jean” (p. 21).
Yet the actual incident Grandin referenced was decidedly more prosaic than this dramatic opening suggests. Grandin went on to describe how, as a child, she threw an uncomfortable hat out of an open window in her mother’s car. This caused her mother to lose control of the vehicle—certainly dangerous, but hardly the dramatic tragedy first implied. From the very beginning of the text, the tone is set. Autism is dangerous, even when manifested in seemingly trivial things such as disliking an itchy hat.
Nobody, Nowhere is superficially quite different from Emergence. It reveals the perspective of a decidedly less privileged autistic woman. Williams, who was Australian, was not diagnosed with autism as a child. Like many other autistic people who grew up in the 1960s and 1970s, she received alternative diagnoses, including psychosis. Williams discovered that she was autistic as an adult, after going through many years of familial abuse, homelessness, and domestic abuse in relationships with men. Her lyrical prose gives the book a very different reading experience than Emergence.
Yet despite these important differences, there are several similarities between the works. Nobody, Nowhere also began with a forward from Bernard Rimland, which echoed many of the same themes as the Emergence introduction. Rimland praised the book for providing inside insights into autism, which he valued as a researcher and as a parent. He explained, “Much of what Donna Williams has written about the experience of autism was already familiar to me—at an intellectual level. But Nobody, Nowhere provides a heretofore unavailable—and alarming—highly subjective appreciation of what it’s like to be autistic” . According to such non-autistic “experts,” autistic people’s internal experiences were inherently alarming.
A second introduction, written by Australian psychologist Lawrence Bartak, also appeared in Nobody, Nowhere. Bartak discussed autism from a clinical perspective at length. As with Emergence, the multiple introductions essentially suggested that autistic people can’t be fully trusted to narrate autism. Their words must first be contextualized by non-autistic “experts” who can attest to the narrative’s authenticity.
This is not to say, however, that autism is presented identically in the two narratives. While Emergence suggested that autism trapped Grandin in an unpleasant world of isolation, Williams admitted that she enjoyed being “in her own world” at times.
Everything I did, from holding two fingers together to scrunching up my toes, had a meaning, usually to do with reassuring myself that I was in control and no one could reach me, wherever the hell I was. Sometimes it had to do with telling people how I felt, but it was so subtle it was often unnoticed or simply taken to be some new quirk that ‘mad Donna’ had thought up. 
Hence, Williams showed that her autistic chances—even ones that were thought of as “mad Donna”—served a meaningful purpose for her. In this way she anticipated many of the ideas of the neurodiversity movement, including the popular notion that “behavior is communication.”
I had created an ego detached from the self, which was still trapped by crippled emotions. It became more than an act. It became my life, and as I had to reject all acknowledgment of an emotional self, I had to reject all acknowledgment of Donna. I eventually lost Donna and became trapped in a new way. 
Although Williams acknowledged that her response was in large part shaped by the abuse and rejection she suffered, the narrative as a whole suggested that entrapment—either in her one world or in a fictional persona of her own creation—was the inevitable result of autism. She frequently referred to herself and other autistic people as “trapped and frightened” . Like Grandin in Emergence, Williams expressed the hope that her account would help others.
Emergence: Labeled Autistic and Nobody, Nowhere were not specifically written for a parent audience. Yet in an era where first-person accounts of autism were so scarce, it is highly likely that they played an important role in the then-small autism parent community—the intended audience for “Don’t Mourn for Us.”
Given the centrality of parents in “Don’t Mourn for Us,” it is worth examining how parents are discussed in Grandin and Williams’ earlier works. For Grandin, her mother, referred to simply as “Mother” in the text, was a near saint-like figure. Excerpts from Eustacia Cutler Grandin’s journal are presented at several points in the book, along with several letters to teachers and medical professionals. Even today, the two women frequently make public appearances together. Grandin has often credited her mother’s decisions for her own success. (Her father appeared much less frequently in the text, reflecting the 1950s gender roles that shaped Grandin’s upbringing.)
Today many autistic activists would criticize Eustacia Cutler’s parenting methods, which included admonishing her young daughter for a failure to make eye contact. But Grandin herself never wavered in her admiration, presenting Cutler as a loving, no-nonsense mother who provided sage advice to Grandin throughout her life while also advocating for her needs. Indeed, many people who have heard Grandin speak in recent years—myself among them—have noted Grandin’s tendency to present a nostalgic view of her childhood. This includes her mother’s strict style of parenting, which is particularly jarring to twenty-first-century audiences.
In strong contrast to Grandin, Williams criticized her family in Nobody, Nowhere. She movingly described the abuse she suffered at the hands of her mother and brother: “To them, I was a retard, a nut, a spastic. I threw ‘mentals’ and couldn’t act normal. ‘Look at her, look at her,’ they would say about a child who, to them, was either a ‘retard’ when I was in my own world or a ‘nut’ when I was in theirs. I couldn’t win” .
However, Williams also empathized with her family. She went on to write, “Looking at it from their point of view, I guess they couldn’t win, either. My brother had probably woken up to the fact that I hardly acknowledged, let alone accepted, him” .
In Williams’ narrative, the abuse she suffered at the hands of her family becomes understandable, though not quite acceptable. Although she rejected the idea that her mother’s coldness had caused her cognitive differences, rejecting the “refrigerator mother” hypothesis, she concluded that her disability likely impacted her mother for the worse.
Williams wrote, “Though [my mother] was probably a social cripple before I was born, I accept my share of the responsibility for making her one, and for robbing both her and my brother of a free, more independent relationship with each other” . In a mere sentence, Williams hence reiterated an incredibly harmful view of her disability that she has internalized—the notion that her own differences caused discord within her family. According to this formulation, she was largely responsible for their problems, which included abuse from both parents and Williams’ mother’s alcoholism. This abusive home environment would eventually lead Williams to leave her home at the age of fifteen.
Emergence and Nobody, Nowhere might have challenged the pernicious view that autistic people lacked thoughts and feelings, but the narratives reinforce another idea: that having an autistic child is a tragedy for families.
Both Grandin and Williams offered suggestions for parents, both implicitly and explicitly. Emergence, for example, includes a final chapter with a bulleted list of suggestions for helping autistic children. By and large these were practical suggestions involving sensory sensitivity, diet, and related issues. Although a few tips gestured toward the direction of self-acceptance, neither writer suggested that autism was anything other than a disability to be mourned.
Then Jim Sinclair came along.
The Radicalism of Sinclair
“Don’t Mourn for Us” came out of the autism culture of the 1980s and early 1990s. In fact, Sinclair was friends with Williams, whom xe met on an early online mailing list for the parents of autistic people. Sinclair, Williams, and Xenia Grant formally founded ANI in February of 1992, when Williams visited the U.S. from Australia to promote Nobody, Nowhere . Initially, ANI began as a pen pal program and a newsletter—the same newsletter which published “Don’t Mourn for Us” one year later.
It is clear from Sinclair’s writings in the early 1990s and later that xe was immersed in the world of autism parents and professionals. Autreat, the retreat Sinclair ran for more than fifteen years, grew out of these experiences. Sinclair, Williams, and other autistic people who attended non-autistic-run conferences found them to be inaccessible, prohibitively expensive, and sometimes downright dehumanizing.
There were a few exceptions. In 1992, Sinclair wrote very positively of a TEACCH conference xe attended in 1989 . It speaks to the paucity of such events at the time that Sinclair drove 1200 miles to attend the conference. The essay, entitled, “Bridging the Gaps: An Inside-Out View of Autism (Or, Do You Know What I Don’t Know?),” was published in a TEACCH anthology that also included pieces from non-autistic experts Lorna Wing and Catherine Lord [7, 12].
This 1992 piece—cited much less frequently than “Don’t Mourn for Us”—provides interesting glimpses into Sinclair’s intellectual evolution. More so than any of Sinclair’s subsequent writings, this essay included discussion of Sinclair’s personal experiences and autism-related impairments. As the parenthetical part of the title suggests, Sinclair presented the autistic experience largely as an experience of not knowing. This not-knowing experience encompassed both not knowing the norms of the neurotypical world and not knowing about one’s own autistic differences.
I’ve been living with autism for 27 years. But I’m just beginning to learn about what that means. I grew up hearing the word but never knowing what was behind it. My parents did not attend programs to learn about autism, did not collect literature to educate schools about autism, did not explain, to me or to anyone else, why my world was not the same one that normal people live in. 
For Sinclair, this feeling of isolation and not-knowing started to dissipate upon attending autism conferences. These conferences included a small number of other autistic adults. Yet at the same time, the autism conference world introduced Sinclair to a new type of isolation: being seen as an Other by non-autistic parents and professionals. To them, autistic people’s experiences were something to be studied under a microscope, like an unusual virus. (Indeed, one sees evidence of this attitude in Rimland’s introduction to Grandin’s and Williams’ narratives.) Sinclair did not care for such attitudes.
In the article, Sinclair took care to dispel myths about autistic people. The article’s first subheading is “Being Autistic Does Not Mean Being Mentally Retarded,” in a point that reads to many contemporary autistic activists as problematic in its failure to extend solidarity toward people with intellectual disabilities. Other subheadings are “Being Autistic Does Not Mean Being Uncaring” and “Being Autistic Will Always Mean Being Different.”
But being different was not bad to Sinclair. “Bridging the Gaps” included several hints at the neurodiversity ideology that Sinclair would later articulate more fully. Xe started to articulate the idea that autistic people’s impairments largely stemmed from societal factors, not inherent deficits.
Not all the gaps are caused by my failure to share other people’s unthinking assumptions. Other people’s failure to question their assumptions creates at least as many barriers to understanding. The most damaging assumptions, the causes of the most painful misunderstandings, are the same now as they were when I was a child who couldn’t talk, a teenager who couldn’t drive, and a college student who couldn’t get a job: assumptions that I understand what is expected of me, that I know how to do it, and that I fail to perform as expected out of deliberate spite or unconscious hostility.
Other people’s assumptions are usually much more resistant to learning than my ignorance. As a graduate student I encountered these assumptions in employers who had extensive backgrounds in special education. 
Sinclair did not specifically reference the social model of disability (which was much less well-known in 1992 than it is today, even in disability circles). However, xe did suggest a view of autism congruent with the social model.
Parents often report that learning their child is autistic was the most traumatic thing that ever happened to them. Non-autistic people see autism as a great tragedy, and parents experience continuing disappointment and grief at all stages of the child’s and family’s life cycle.
But this grief does not stem from the child’s autism in itself. It is grief over the loss of the normal child the parents had hoped and expected to have. 
With this declaration, Sinclair identified the source of parental grief over having an autistic child. The fundamental cause was not the inherent tragedy of disability, but rather the pernicious cultural assumption that parents ought to have a “normal” child.
Such an assumption, Sinclair wrote, was damaging to both the parent and child. Although xe acknowledged that “Some amount of grief is natural as parents adjust to the fact that an event and a relationship they’ve been looking forward to isn’t going to materialize,” Sinclair urged parents to move beyond those feelings. Xe stated simply, “Continuing focus on the child’s autism as a source of grief is damaging for both the parents and the child, and precludes the development of an accepting and authentic relationship between them” .
Such sentiments are radical even today. But when we consider the relevant historical context, they become even more so. Prior to Sinclair’s declaration, the default mode for autistic people discussing autism was to focus almost exclusively on their personal experiences. Even if they admitted to enjoying parts of the autistic experience (as did Donna Williams), previous autistic writers always made sure to acknowledge the pain and danger that autistic people inflicted upon family members. Sinclair told parents that their feelings of grief, while very real, weren’t the result of autism per se.
You try to relate to your autistic child, and the child doesn’t respond. He doesn’t see you; you can’t reach her; there’s no getting through. That’s the hardest thing to deal with, isn’t it? The only thing is, it isn’t true.
Look at it again: You try to relate as parent to child, using your own understanding of normal children, your own feelings about parenthood, your own experiences and intuitions about relationships. And the child doesn’t respond in any way you can recognize as being part of that system.
That does not mean the child is incapable of relating at all. It only means you’re assuming a shared system, a shared understanding of signals and meanings, that the child in fact does not share. 
In rejecting the “own world” paradigm, Sinclair also offered practical advice to struggling parents. But xe asked parents to understand their child’s perspective rather than impose their own preferences and perspective on the child.
Although “Don’t Mourn for Us” has oftentimes been interpreted as being dismissive of parental perspectives, Sinclair explicitly acknowledged the reality of parental grief, and the array of impairments that autistic people can experience. However, xe strenuously argued that parental grief should not be directed at the child. Xe wrote, “You didn’t lose a child to autism. You lost a child because the child you waited for never came into existence. […] 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” .
The essay also included commentary about how parent-run autism organizations could reorient themselves to better reflect autistic people’s needs and priorities. Sinclair went on to suggest, “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” . Xe hence invited parents to join autistic adults in creating a better world for autistic people—but not by demanding that autistic people “recover.” Rather, Sinclair’s vision of neurodiversity prioritized the reshaping of social expectations and norms. Non-autistic parents had a place in this movement, but it was primarily as allies to autistic adults (in the parlance of today’s social justice vocabulary).
By choosing to take this radical stance, Sinclair sacrificed much. A friend of mine who conversed with xem on the subject said that Sinclair was on track to become a professional autistic speaker akin to Grandin and Stephen Shore. After taking more radical stances on autism and neurodiversity, those opportunities were no longer open. For a time, Sinclair was homeless. Xe never found a full-time job in xyr chosen profession as a rehabilitation counselor despite obvious knowledge and qualifications.
Yet Sinclair’s sacrifices have borne considerable fruit. Although much has changed since the essay’s original publication, the core idea articulated in “Don’t Mourn for Us” has continued to animate neurodiversity activism. Sinclair changed the paradigm with which autistic adults would approach public speech. No longer were autistic people limited to personal narratives that relied heavily on tropes of autism as tragedy or entrapment. Autistic people could—and would—articulate their own views independent of parent and professional validation. That is the legacy of “Don’t Mourn for Us.”
Sinclair, Autspace, and the Development of Autistic Culture
Autistic culture as it exists today would be very different if not for the considerable contributions of Jim Sinclair. However, autistic culture and the philosophy of neurodiversity have undergone substantial shifts since 1993.
One of the most notable features of Sinclair’s early work is the extent to which it began as a response to autism parent and professional culture. In some ways, this is seen even in Autreat, which Sinclair designed to be an autistic space that prioritized autistic needs .
Take, for example, Autreat’s famous “Ask a Neurotypical” panel. According to Sinclair’s description at one of the Autreats I attended, the idea for the panel originated as a parody of sorts. Sinclair disdained the “ask an autistic” panels frequently found at conferences for parents and participants. Xe had participated in many such panels, in which autistic panelists were asked entirely inappropriate questions such as “do you have sex?”
Xyr idea was to turn the tables. At the “Ask an NT” panel, autistic audience members would ask non-autistic panelists the same sorts of questions. This subversive idea, focused as it was on flipping the script, was fairly characteristic of the approach Sinclair took in “Don’t Mourn for Us” and throughout xyr other works.
However, xe ran into a problem when trying to implement this plan. The autistic attendees at Autreat felt that the idea was unethical, premised as it was on asking people invasive questions in public without advance warning. So Sinclair scrapped the idea and the “Ask an NT” panel turned into something very different—an opportunity for autistic adults to learn more about non-autistic perspectives in a non-judgmental environment. (In one example of this dialogue, Sinclair asked panelists why neurotypicals enjoy eating at restaurants. Aside from the obvious pleasures of someone else cooking food for you, Sinclair asked, why bother with it?)
The evolution of the “Ask an NT” panel is in some ways emblematic of autistic culture’s historical trajectory. Although it originated as a response to parents and professionals, it has since grown and mutated to develop its own traditions and community norms. Certainly Sinclair played a major role in the development of autistic culture, but always in dialogue with other autistic people.
Sinclair and ANI, the organization xe co-created, did not directly engage in policy advocacy. Yet the philosophy xe established would form the foundations of today’s autistic-led policy advocacy work. Ari Ne’eman, co-founder of the Autistic Self-Advocacy Network (ASAN), explained it to me this way: “I never would’ve founded ASAN if not for Jim. ASAN might have popularized neurodiversity, but Jim Sinclair created it” (personal communication, February 20, 2019).
It is this fundamental idea that is the greatest legacy of “Don’t Mourn for Us.” Popular autism narratives of the 1980s and early 1990s suggested that autistic people were primarily useful for our ability to provide “inside insights” into the autistic experience. Sinclair transformed the paradigm by suggesting that autistic people could articulate a larger vision for social change. And we could do so without capitulating to the notion that autism was inherently tragic.
Sinclair’s intellectual legacy extends well beyond “Don’t Mourn for Us.” Xe was likely the first autistic person to reject person-first language, in a 1999 essay “Why I Dislike Person First Language” . Xe also coined the term “self-narrating zoo exhibit,” which described the tendency of non-autistic parents and professionals to solicit personal narratives—like Grandin’s and Williams’—that treated autistic people as peculiar curiosities. In all of xyr work, Sinclair was uncompromising in xyr willingness to question dominant narratives of autism as created by both non-autistic experts and less radical autistic representatives—the ones who were more likely to get conference invitations and book contracts.
Given Sinclair’s emphasis on questioning all received wisdom, there is a certain irony to the now canonical status of “Don’t Mourn for Us.” The piece is certainly deserving of such status, but I believe Sinclair would be the first to admit that it was by no means intended as the final word on neurodiversity as a philosophy. It’s particularly important to note that Sinclair’s early work was shaped heavily by parent- and professional-dominated autism culture—a necessary move at the time xe first wrote the essay. Fortunately, we have now reached a point where it is possible to start creating more of our own cultural and intellectual traditions—a process which Sinclair began. Moving forward, I’d propose that future generations of autistics embrace the spirit of Sinclair’s work by continuing to question, to challenge, and to move forward with new and innovative ideas.
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