Panel by Panel
Considering Life on the Autism Spectrum Through Making an Auto/Biographical Comic
Assunta Alegiani (Berlin)
An image that lingered in my head, an image conjured by something my mother had said, stayed with me for years â€“ my mother in free fall through darkness. This is what I pictured when she, at age 50 and freshly diagnosed with Asperger Syndrome, told me that throughout her life, no matter how well things were going, there always came a point where she would be thrown â€ºout of the curveâ€¹.1 Over time my urge grew to materialize this image, to explore my feelings attached to it. Through drawing I could give it concrete shape, out of which developed my comic Entgleiten, a portrait of my relationship with my mother in the light of her diagnosis. The artist Eva Cardon writes that Â»from the point of view of the artist, comics also lend themselves for self-reflection. For this reason, many authors use the genre mainly to process their personal situation with a visual diaryÂ« (161). Entgleiten is not a diary exactly, but it protocols my process of making sense of the past in the light of the present. Joel Michael Reynolds uses the concept of the extended body to describe the complex interconnections of environmental, biological, and socioeconomic factors in shaping someoneâ€™s degree of ability within a social setting (33). Though I was not aware of this concept when I was working on Entgleiten, my motherâ€™s extended body was essentially what I was trying to understand through the making process. I wondered what it must have been like to go through a large portion of life undiagnosed, how the lack of diagnosis might have played a part in some of the difficulties in my relationship with my mother, and how to understand the changes in her that the diagnosis had initiated. It was a way to both engage with her experience and make sense of my own from my perspective as a child with an autistic parent, a perspective I would have liked to read about when I was seeking to better understand our relationship and one I found to be missing in the general discourse around autism spectrum conditions (ASC)2. In the following paper, I reflect on making the auto/biographical comic Entgleiten. To begin with, I will briefly outline how ASC, gender and age intersect in conditioning an environment that contributes to or hinders a flourishing life. I will then consider the way comics artists use the medium to draw out the discrepancies between internal and external environment, and how I was able to explore these through comicsâ€™ formal features in the process of making Entgleiten.
Entgleiten is drawn in black ink pen on A4 printing paper and I self-published it as an A5 zine in 2020. The content is divided into vignettes that can stand for themselves but also connect if read in sequence. The form was inspired by Gabrielle Bellâ€™s Everything is Flammable (2017), a comic that begins when her motherâ€™s house burns down and tracks Gabrielleâ€™s subsequent visits to her mother to help her set up a new home. To use vignettes felt like an accurate representation of working through fragmented memories and events that I was trying to make sense of with the new knowledge of my motherâ€™s diagnosis and with some distance. Creating a longer narrative would have forced me to impose a kind of closure that I was not able to grasp. The form of vignettes also allows me to come back to the comic and add to it. Though the comic is self-contained, it was made with the intention to continue it, which I started on this year. In its current form, Entgleiten focuses on my motherâ€™s diagnosis and her life prior to it. In the continuation, I focus on the time post-diagnosis.
Entgleiten portrays both my own life as well as my motherâ€™s, thus moving between autobiography and biography. I use the term auto/biography to mark this kind of hybrid focus, also to be found, for example, in Art Spiegelmanâ€™s Maus I+II (1986, 1992) and Alison Bechdelâ€™s Fun Home (2007).3 To portray somebody elseâ€™s life can easily cross a line. Throughout the creative process, I was constantly negotiating what to show and what to omit to be able to work through my memories and thoughts without compromising my motherâ€™s privacy. I considered interviewing her to make it more of a collaborative work, but ultimately decided against this. Instead, to anchor the comic in my point of view and to make clear that Entgleiten was my subjective account of events, I employed narration in the text boxes. This split between the narrating I and the narrated I helped me enter a conversation between my past and present selves to mediate my experience then and what I knew now as a result of a process of reflection. Cartoonist Chris Ware describes his work process as one that, in part, is intuitive, through drawing without doing a fixed page layout beforehand. Â»Iâ€™d like the panels to have the same sort of organization on the page that I feel that certain events have in my mind, where certain things kind of swirl around or connect in ways that I donâ€™t quite understand.Â« (qtd. In Chute 2014, 228). It is a way to generate thought processes through making which I, too, found helpful in thinking my way through the material and organizing the page. usually I started out with the text and a rough idea of how I wanted it to divide the panels, though sometimes it developed the other way around, with a clear image I had in mind that I would later organize the text around. In both cases, the other panels would develop as I was moving along, sometimes also changing text or moving it around in the process.
The Intersection of ASC, Gender and Age
Developing Entgleiten was part of my masterâ€™s thesis, for which I researched how ASC (Autism Spectrum Conditions) is represented in auto/biographical and pedagogical comics.4 Through this research I learned about the complicated diagnostic history of Asperger Syndrome and the role gender plays in the diagnosis,5 or misdiagnosis, of ASC. In recent years, accounts of women diagnosed later in life have increasingly been reported on,6 just as the medical research community has begun to study ASC in girls and women, specifically. It appears that for girls and women age is a relevant factor in receiving a diagnosis and access to adequate support systems. Though the research is still in its early stages (Bargiela et al., 3282) there is increasing evidence for the existence of a female ASC phenotype (Bargiela et al., 3282), meaning ASC presents differently in girls and women than it does in boys and men, which could account for why females are diagnosed less often and much later than males. Getting diagnosed with ASC later in life has wide-ranging implications for an individualâ€™s life trajectory:
People with ASC are at risk of a range of emotional, behavioural, social, occupational and economic dif- ficulties (e.g. Howlin and Moss 2012). The timely identification of ASC can mitigate some of those risks and improve quality of life, for example by identifying needs and appropriate interventions, increasing access to services, making others less judgemental of the person with ASC and their parents, reducing self-criticism, and helping to foster a positive sense of identity (Hurlbutt and Charmers 2002; Portway and Johnson 2005; Ruiz Calzada et al. 2012; Russell and Norwich 2012; Wong et al., 2015). Compared to males, females are at substantially elevated risk of their ASC going undiagnosed: their difficulties are frequently mislabelled or missed entirely (Lai and Baron-Cohen 2015). (Bargiela et al., 3281).
In their study, researchers Sarah Bargiela et al. have found many of their study subjects, women diagnosed with ASC between 19 and 30, to believe Â»a delayed diagnosis had been detrimental to their wellbeing and educationÂ« (3286), due in part to a lack of knowledge of how ASC presents in females (3286). Considering the gender ratio in adult ASC diagnostic services is lower than in child services (Leedham et. al, 136), greater age seems to increase the chances for a (delayed) diagnosis and, with respect to gender, plays a key role in receiving necessary support. Thus, for women, age could be considered a decisive factor in how life with ASC is experienced. A study that looked at the experiences of women who were diagnosed with ASC in late adulthood, at age 40 and over, found that Â»[o]ne influence on declining mental health pre-diagnosis was the lack of agency women had in understanding themselves, something these women had lived with for many yearsÂ« (Leedham et al., 143). The image of my mother in free fall is essentially a visualization of this feeling of lacking agency that has accompanied the greater part of her life (19). In it, her out-of-control body is drawn against a black background that swallows the panel borders to translate a sense of isolation and limitlessness, lack of agency experienced as lack of control.
While some of the study subjects had likely found it difficult to integrate the diagnosis into their identity in middle to late adulthood, many had found relief and power in it, including Â»letting go of guilt associated with meeting their own needsÂ« (Leedham et al., 144). This notion of guilt and relief was a main aspect I wanted to include in my comic, as it confoun- ded me at first. The two-page sequence of my mother in free fall resolves with her realization Â»Aber jetzt weiÃŸ ich, ich bin nicht schuld! Ich bin einfach so und das ist ok.Â« (transl.: Â»But now I know itâ€™s not my fault! I just am this way and thatâ€™s okÂ«, 19-20). In the two panels prior, her facial expression shows despair and exhaustion, then frustration and anger. But in the last panel, at this realization, it changes to a slight smile, her eyes tired but her face relaxed. This reaction is mirrored in Daniela Schreiterâ€™s Schattenspringer 2, part of an autobiographical comics-trilogy in which the creator portrays her life with Asperger Syndrome, receiving her diagnosis only in her 20s. Of this, she writes: Â»Bei mir setzte auf einmal eine unglaubliche Erleichterung ein. Ich wusste endlich, wer ich bin! Warum ich so bin! und dass das vÃ¶llig in Ordnung ist und ich mich nicht dafÃ¼r schÃ¤men musste [...] // Ich hatte keine Schuld an meiner Andersartigkeit.Â«7 (155) In both accounts, there is hopefulness, the diagnosis a springboard for reconsidering crippling assumptions that have shaped the sense of self.
Drawing Out the â€ºExtended Bodyâ€¹ in Comics
The relief a diagnosis brings can be a starting point for finally beginning to develop a sense of agency. Certainly, my motherâ€™s diagnosis kicked off a process of self-exploration in her, a kind of re-situating in the world from a vantage point suddenly shifted at 50 years old. I came to think of my motherâ€™s life as pre- and post-diagnosis because of the changes the diagnosis initiated in her. Â»However one conceives of it, at no age is the good life merely a question of individual will or ability â€“ it is possible only thanks to social contexts and environments that support itÂ«, writes Joel Michael Reynolds (31). Making the comic, I considered how her social context had determined her well-being over the years, with the lacking diagnosis a compromising factor. Reynolds proposes the concept of the extended body to think about the relationship between the body, the social, and the natural environment, which he deems is at the heart of the debate over the meaning of disability (Reynolds, 33). The concept Â»refers to the ways in which oneâ€™s body always extends into its environment, just as its environment extends into itÂ« (33). He further stresses that oneâ€™s environment and body are Â»conditioned by what we would call my social body â€“ my class, race, place, gender, sexuality, ethnic history, and so on, and the power and networks they affordÂ« (33).
Many comics that depict illness or disability visually translate the challenges of navigating the external environment and the impact it has on the internal. Throughout the Schattenspringer comics, Schreiter draws herself with feelers on her head to signify her difference, likening herself to an alien on planet Earth. These feelers are only â€ºoutâ€¹ when she is in an environment she feels at ease in, such as her apartment or when she plays video games with friends. Describing a common coping mechanism among females, so-called camouflaging,8 they withdraw as soon as she has to navigate the world. In Dumb â€“ Living Without a Voice (2018) Georgia Webber also finds a striking visual metaphor for the struggle between her personal needs and an environment that does not accommodate them. The comic details Webberâ€™s experience with a vocal cord injury that renders her temporarily disabled and requires her to avoid speaking for months to expedite the healing process. Her character splits into two versions, one drawn in a black line, the other in a red one (27). This splitting of her self literalizes her struggle to adapt to her temporary disability in an ableist world. She also depicts how her ability to work is significantly compromised by her illness and the anxiety that the bureaucratic process leaves her with as she becomes dependent on disability support.
Visual metaphor and the possibility to contrast text and image render comics a medium adept at expressing the discordance between inner life and external environment. In my process of contemplating the way my motherâ€™s environment might have affected her in the past, I made use of this potential in the making of the comic. In one image, my mother is shown vacuum cleaning as loud music plays above her body. In the image (3) sound is represented as jagged, swirling lines. These lines (with faint text in between) stand in for the music, while harsher, more zig-zaggy lines jut out from the vacuum cleaner. The sounds in the image envelop her and act as a sort of shield. Imagining the high noise level that was often the background sound in our household, I came to understand that she had developed a coping mechanism through the intentional increase of selected sound sources when our chaotic and crowded home life overwhelmed her. Similarly, I make use of visual hyperbole â€“ my mother as a T-Rex (4) â€“ to contrast my past assumptions about her insensitivity to external stimuli with more present-day insight through the narration.
In the process of making the comic, I realized that I had spent little time with my mother outside of the house since my siblings had been born. Thus I set the majority of the vignettes inside the house to characterize my motherâ€™s environment as a full-time caretaker of five children and the household, one in which she was rarely able to be alone.9 The panels where she is seen in action show her carry out domestic tasks such as cleaning, cooking, and caring for children. A simple three-tier structure with mostly one to two panels per tier is the base panel structure. A page that shows my mother and me in conversation largely follows this structure. In this sequence, we sit at a table drinking tea (14). The panels are sparse, there is no background, the focus is on the text while on the page overall the focus is on my mother, with two panels in the middle tier that frame her close-up. It is a rare instance where she is shown to speak at length, the panel framing her upper body and the speech bubble only. This panel layout changes on the next page, where the obligations of domestic life textually and visually interrupt the previous sequence. A jagged speech bubble that indicates â€ºyellingâ€¹ protrudes from one panel into another (15), interrupting the calm conversation that was shown on the previous page in which my mother reflects on her past.
The following panel is split into four. It shows my mother making dinner, performing the various tasks that follow after dinner, cleaning up and putting children to bed. In-between is a panel that shows the family at the dinner table. It is crowded, with bodies and speech bubbles competing for space, overlaying each other. I wanted it to feel overwhelming to navigate, to feel chaotic and claustrophobic at the same time. My motherâ€™s presence on this page is marked by the absence of her body and speech. In the two panels split into four, fragments of her body are only visible as they pertain to the activity of the task she carries out. Hands holding a pot, shoulders propping up a sleeping childâ€™s head. What she says in these panels is short, reactions to what other family members do or say. In the last panel on this page, my motherâ€™s body is entirely absent; just a speech bubble from outside the panel indicates that she is leaving the room. I wanted to convey the sense that my mother is disappearing behind all these tasks to take care of others with little to no time for herself and her needs. In my continuation of the comic, this environment has changed as we children have become adults.
Time and Aging in Comics
Depictions of aging and old-age often focus on the decline of the body and cognitive ability. According to Irmela KrÃ¼ger-FÃ¼rhoff, the Â»multiplication and individualizationÂ« of depicting old age in comics is achieved Â»through the shaping of the specific corporeality of the comic characters. This is obvious insofar as the body is a central place where and in which processes of aging are experiencedÂ« (my translation, 164).10 Comics, KrÃ¼ger-FÃ¼rhoff points out, add to a greater variety in representing the experience of old age. However, the passage of time I considered in making the comic was not about the aging that alters the body but about the changing circumstances both in- and external that can hinder or enable a flourishing life. We age throughout all life stages, and with this aging our extended body changes, too. In Entgleiten, my mother and I grow older as our relationship changes. Comics scholar Hilar Chute points to comicsâ€™ Â»ability to use the space of the page to interlace or overlay different temporalities, to place pressure on linearity and conventional notions of sequence, causality, and progression. [...] This is what the form of comics always does best: enacting, rather than only thematizing, the relationship of past and present.Â« (Chute 2016, 235) This â€ºenactingâ€¹ of past and present makes felt the simultaneity with which both contribute to our sense of self and perception of our presence. As Scott McCloud writes, Â»in comics, the past is more than just memories for the audience and the future is more than just possibilities. [...] Both past and present are real and visible all around us. [...] Wherever your eyes are focused, thatâ€™s now. But at the same time your eyes take in the surrounding landscape of past and future.Â« (104). As such, comics can convey the experience of aging in the sense that it is, too, the experience of different temporal realities from an ever-changing point of view.
Two panels show my motherâ€™s bookshelf full of objects accumulated over time (12) as well as specific book titles (13). Both function to characterize her and to refer to her life lived, to the many different life phases she had already experienced by the time she was diagnosed with Asperger Syndrome, the way her extended body had morphed over time. Her objects had always been a way for me to access her past experience, which seemed remote to me otherwise, as she never speaks about it unless specifically asked. Similar to comics panels composing a page, the shelf puts the objects it holds in relation to one another as they refer to differing planes of time that layer and interweave, eschewing linearity. As such, like panels on a page, the drawn shelf represents the workings of memory, the way we carry in us past and present all the same.
McCloud has stressed how panel size, frame and the usage of bleeds all contribute to the way the reading flow of comics is directed, as well as to the experience of duration, time and what is given emphasis (McCloud, 99â€“106). When using bleeds, Â»[t]ime is no longer contained by the familiar icon of the closed panel, but instead hemorrhages and escapes into space. [...] Such images can set the mood or a sense of place for whole scenes through their lingering timeless presenceÂ«, he writes (103). In Entgleiten, I made use of bleeds in a few full- or double-page spreads. With each I intended to convey a sentiment that is overarching to the comic and that would invite a reader to linger. For example, in a double-page spread a drawing of my mother holding me is repeated four times; in each we grow older and, in the last two, I increasingly slip from her grip. There is no text. It is a timeline that visualizes a feeling, the gradual process of slipping away over a long period of time that my mother and I both experienced as I grew older.11 My aging is immediately visible through the vast developmental changes between a baby, a young child, an older child and a teenager while her aging is less obvious, mainly marked through changing hair lengths and styles.
Aging is, among others things, the process of amounting experience of oneself as an actor within a social fabric and, equipped with this, to develop a stronger sense of self and agency. But my mother, to some degree, was only able to begin this process when she was 50, once she received her diagnosis. As I learned more about autism, I came to see the structural shortcomings that contributed to her late diagnosis, which make her experience a common one for many women with ASC. And through comic-making I could excavate thoughts and feelings that were not yet readily formulated, give them shape without imposing a tight narrative structure. It enabled me to think through her experience within our family environ- ment as well as to process some of my own difficult feelings regarding our relationship.
- Bargiela, Sarah et al.: The Experiences of Late-diagnosed Women with Autism Spectrum Conditions. An Investigation of the Female Autism Phenotype. In: Journal of Autism and Deve- lopmental Disorders, 46 (2016), p. 3281â€“3294.
- Bargiela, Sarah (W), Standing, Sophie (A): Camouflage. The Hidden Lives of Autistic Women. London and Philadelphia: Jessica Kingsley Publishers, 2019.
- Bechdel, Alison: Fun Home. A Family Tragicomic. Boston and New York: Houghton Mifflin Harcourt (First Mariner Books Edition), 2007.
- Bell, Gabrielle: Everything is Flammable. Minneapolis: uncivilized Books, 2017.
- Cardon, Eva: â€ºus Two Togetherâ€¹. Creating an Autobiographical Visual Narrative about Dementia. In: DIEGESIS. Interdisciplinary E-Journal for NarrativeResearch / Interdiszipli- nÃ¤res E-Journal fÃ¼r ErzÃ¤hlforschung, 6.2 (2017), p. 160â€“175.
- Chute, Hillary L.: Disaster Drawn. Visual Witness, Comics, and Documentary Form. Cam- bridge: Harvard university Press, 2016.
- Chute, Hillary L.: Outside the Box. Interviews with Contemporary Cartoonists. Chicago and London: The university of Chicago Press, 2014.
- Gallardo, Maria and Gallardo, Miguel: Maria y yo. Bilbao: Astiberri, 2007 .
- Hill, Amelia: Autism. â€ºHidden poolâ€¹ of undiagnosed mothers with condition emerging. In: The Guardian. <https://www.theguardian.com/society/2016/dec/26/autism-hidden-pool- of-undiagnosed-mothers-with-condition-emerging>. 26.12.2016. Accessed: 26.09.2019.
- Hill, Amelia: â€ºDiagnosis is rebirthâ€¹. Women who found out they were autistic as adults. In: The Guardian. <https://www.theguardian.com/society/2021/nov/19/diagnosis-women-autism- later-life>. 19.11.2021. Accessed: 19.06.2022.
- Hull, Laura et al.: â€ºPutting on my Best Normalâ€¹. Social Camouflaging in Adults with Autism Spectrum Conditions. In: Journal of Autism and Developmental Disorders, 47 (2017), p. 2519â€“2534.
- KrÃ¼ger-FÃ¼rhoff, Irmela Marei: Entfaltungen. Alternde KÃ¶rper im Comic. In: Closure. Kieler e-Journal fÃ¼r Comicforschung, #7.5 (2021), S. 163â€“187. <http://www.closure.uni-kiel.de/ closure7.5/krueger-fuerhoff>. 05.07.2021.
- Â»Leben mit Asperger â€“ â€ºIch habe mich wie ein Alien gefÃ¼hlt.â€¹Â« On: Deutschlandfunk Kultur. <https://www.deutschlandfunkkultur.de/asperger-autismus-depression-100.html>. 10.04.2022. Accessed: 07.10.2022.
- Leedham, Alexandra et al.: â€ºI was exhausted trying to figure it outâ€¹. The experiences of females receiving an autism diagnosis in middle to late adulthood. In: Autism, 24(1) (2020), 135â€“146.
- McCloud, Scott: understanding Comics. The Invisible Art. 27th ed. New York: William Mor- row, 1994 .
- Reynolds, Joel Michael: The Extended Body. On Aging, Disability, and Well-Being. In: What Makes a Good Life in Late Life? Citizenship and Justice in Aging Societies. Special Report. Hastings Center Report, 48.5 (2018), p. 31â€“36.
- Schreiter, Daniela: Schattenspringer 2. Per Anhalter durch die PubertÃ¤t. Stuttgart: Panini Comics, 2020 .
- Spiegelman, Art: Maus I. My Father Bleeds History. New York: Pantheon Books, 1986.
- Spiegelman, Art: Maus II. And Here My Troubles Began. New York: Pantheon Books, 1992.
- Webber, Georgia: Dumb. Living Without a Voice. Seattle: Fantagraphics Books, 2018.
- 1] A direct translation of the German idiom Â»Aus der Kurve fliegenÂ«, meaning to lose control and screw things up.
- 2] In my usage of autism spectrum condition, I follow Bargiela et al.â€™s reasoning: Â»We use the term â€˜autism spectrum conditionsâ€™ (ASC) as a direct synonym for the DSM-5 term â€ºautism spectrumâ€¹ (ASD). This is in accordance with views of members of the autism community, to be more respectful of neurodiversity. Our use of â€ºASCâ€¹ aims to convey that people on the autism spectrum show differences that include strengths as well as difficulties.Â« (Bar- giela et al., 3281, footnote 1)
- 3] In both of these comics, the authors reflect on their respective relationships with their fathers, in the process of which both their own as well as their fatherâ€™s life is portrayed.
- 4] The title of my masterâ€™s thesis is Drawing Out the Invisible Difference: Autism-Spectrum- Disorder in Educational and Auto/biographical Comics, submitted to Freie universitÃ¤t Ber- lin in 2020.
- 5] In the DSM-5, the most recent version of the Diagnostic and Statistical Manual of Mental Disorders, Asperger Syndrome was subsumed under the umbrella term Autism Spectrum Disorder, along with autistic disorder, childhood disintegrative disorder and pervasive de- velopmental disorder not otherwise specified. This year, this change was also applied in the updated version of the International Classification of Diseases (ICD-11).
- 6] For some examples of these personal accounts, see The Guardian articles Autism. â€ºHidden poolâ€¹ of undiagnosed mothers and â€ºDiagnosis is rebirthâ€¹ and listen to the Plus Eins podcast episode Leben mit Asperger.
- 7] Â»Suddenly an incredible sense of relief set in. I finally knew who I am! Why Iâ€™m like this! And that thatâ€™s totally ok and I donâ€™t need to feel ashamed [...] // It was not my fault that I was different.Â« (my translation).
- 8] For more information on camouflaging, see the educational comic Camouflage and the 2017 study â€ºPutting on my Best Normalâ€¹.
- 9] The only part where she is alone is the sequence of her falling when she tells me about her diagnosis.
- 10]Original quote: Â»Diese VervielfÃ¤tigung und Individualisierung geschieht, so meine zweite These, stark durch die Ausgestaltung der jeweils spezifischen KÃ¶rperlichkeit der Comic- figuren. Dies ist insofern naheliegend, als der KÃ¶rper ein zentraler Ort ist, an dem und in dem Alterungsprozesse erfahren werden.Â« (KrÃ¼ger-FÃ¼rhoff, 164).
- 11]â€ºTo slip awayâ€¹ is the English translation of the German word â€ºentgleitenâ€¹, the title of the comic.