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Fasulo, A. (2021). Critical Perspectives in Clinical

Psychology: Autistic Identities. In M. Bamberg, C.
Demuth, & M. Watzlawik (Eds.), The Cambridge
21 Clinical
Handbook Psychology:
of Identity (Cambridge Handbooks in
Psychology, pp. 463-486). Cambridge: Cambridge
Autistic Identities
University Press. doi:10.1017/9781108755146.025
Alessandra Fasulo

When Australian comedian Hannah Gadsby wrote her first stand-up show,
Nanette (2018), about her experience as a gay woman, she had also been
recently diagnosed with autism, but decided against mentioning it. She went
on to discuss her autism only in her second show, Douglas, written two years
later. Gadsby thought the stigma around autism might have undermined the
rest of her story and she needed time to process her diagnosis (Thomas, 2020).
Conversely, UK playwriter Rhiannon Lloyd-Williams wrote her first theater
piece, The Duck (2016), right after her diagnosis. After five years, she reflects:
I couldn’t write it now. Being autistic was something new to me, it was a
beacon, it stood out as my most relevant label because I was still processing
the information I’d been given. Being autistic is still an important part of
who I am [but] . . . somewhere along the way that label slipped in alongside
all my other ones; it sits comfortably alongside “mother” and
“Welsh.” (Lloyd-Williams, 2020)

Both Gadsby and Lloyd-Williams were diagnosed with autism in their twen-
ties but, in entering the public arena for the first time (as good an identity
claim as ever there was one), one felt that being autistic was less urgent and
defining than being gay, whereas for the other autism took precedence and
oriented her self-understanding, as the metaphor of the beacon reveals. Both
Gadsby’s second show Douglas and Lloyd-Williams’s Duck, however, have in
common the drive to explain autism to their audiences, and, to use Gadsby’s
words “create points of accessibility”; they also emphasize that people in the
autistic spectrum are not necessarily similar to one another.
The story of those two women is a good introduction for how identity and
autism are going to be interpreted in this chapter. Autism is a powerful label,
and when a person gets diagnosed, they – and their closest circle – can feel all
the weight of already-established notions and expectations. Autism, however,
neither determines the personality, skills, preferences, and life choices of the

The author wishes to thank Philip Adrian Hunt, a long-standing collaborator in autism research
who has opened up this field for me; the editors, especially Carolin Demuth and Michael
Bamberg, for the fine-comb revision, and Steven Kapp, autism scholar, advocate of neurodi-
versity, and colleague in Portsmouth, for enriching both my reading list and my general
perspective on autism.

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individuals with the condition, nor does it have to be foregrounded in all social
transactions. Furthermore, every new person living with autism is adding to
the general understanding of what autism is, changing, for them and everyone
else with the condition, the very atmosphere that the identity breathes.
Definitions of autism that are produced in different arenas of the public
sphere – science, media, individual people – are always intersecting, but can be
treated separately for analytical and theoretical purposes. In this chapter I will
first present a critique of the notion of identity within the social sciences, and
then follow up the suggestion of treating identity under three separate
research strands.

21.1 Identity: Limits and Alternatives of a Concept

The term identity has recently gone under scrutiny in the social
sciences because of a mismatch between the meaning of the word – the
semantics of which incorporates “sameness” – and the processes it is currently
used to describe, i.e., the dynamics of multiple and contextually variable
identifications (Bendle, 2002; Block, 2006; Brubaker & Cooper, 2000; see
Fasulo & Piazza, 2015 for a review). Brubaker and Cooper (2000) argue that
is not clear why something so fleeting and mutable should also be so important
for social actors. Others criticize constructivist approaches to identity because,
while stressing identity’s multiplicity and situated nature, they often do not
question the reality and internal homogeneity of the social categories the
identities refer to – for example, gender, ethnicity, or indeed a condition like
autism – thereby reinstating the essentialist view that they were trying to get
rid of in the first place (Caniglia, 2013).
Brubaker and Cooper (2000) distinguish three different types of phenomena
that, they argue, are conflated under the term identity in current socio-
psychological research. The first is collective identity, or groupness, and refers
distinctly to the feeling of being associated with others under a particular
label. Collective identities can be more salient when groups act together in
public performances or to achieve social change, but the sense of belonging
can also remain entirely in the symbolic sphere. The second type,
identification, looks at the semiotic processes – discourse, narratives, imagery –
that fabricate identity by generating shared meaning around labels and social
categories. Finally, there is the dimension of self-understanding, which con-
cern the ways in which labels or social categories become part of
individual subjectivities.
Autism is a label for a medical and psychiatric condition, but it is also a
cultural phenomenon, a flag for political activism and a type of subjectivity.
Given this complexity, it is all the more relevant to distinguish between the
different threads delineated above. Definitions and understandings, and there-
fore criteria for assigning people to the autistic spectrum disorder (ASD), are
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interdependent and in constant motion (Silberman, 2017). Furthermore, to

use McGrath’s term, (2017) there can be “cultural disorders” in portraying the
condition and the people who are diagnosed with it, with substantial conse-
quences for them and the society at large, because on such understandings
depends whether we can create environments in which people with autism
can thrive.
This chapter will illustrate identity in autism following the tripartite organ-
ization explained above, after a brief history of how autism came about in
psychiatry and its current medical definitions.

21.2 Autism: The Makers

Autism was not named as a distinct condition until the 1940s; around
that time, psychiatrists Hans Asperger (1940) in Austria and Leo Kanner
(1943) in the United States gave the same name to a syndrome they had
observed in children (Frith, 1991). Apart from some differences that will be
explained later, both scientists described the condition as characterized by
social and affective isolation, inflexible and repetitive patterns of behavior,
restricted interests, and communication impairments.
There is evidence of more connections between the two scholars than
previously thought;1 however, the almost simultaneous identification of the
syndrome has been interpreted in relation to cultural changes preceding the
discovery. Autism is diagnosed on an entirely behavioral basis, and therefore
medical and societal culture in general are the background against which
autism-related behaviors will stand out as pathological (Belmonte, 2008).2
Factors that are hypothesized as partaking in the creation of autism are, in
the first place, modernism, the literary and aesthetic sensibility that swept
across most of the Western world in the first decades of the twenty-first
century.3 Modernist fiction presented socially isolated characters, who doubt
that they share the same reality as their contemporaries, have trouble commu-
nicating, and pursue an interrogation about their own identity (McDonagh,
2008). “Modernism,” McDonagh argues (2008, p. 111), “articulated the

1
Silberman (2017) reported that a close collaborator of Asperger in Vienna was later hired in
Kanner’s lab in the US.
2
Barazzetti et al. (2017), analyzing the archive of an Italian psychiatric hospital, argue that until
the end of the nineteenth century, “idiocy” was probably the diagnosis most autistic children
would get; this would result in institutionalization that in turn prevented any developmental
adjustment through participation in social life. McDonagh (2008) further argues that psych-
iatrists had fine differentiations about types of idiocy and their causes, so the lack of a category
for autism was not due to absence of close examination of children and adults with
this diagnosis.
3
Examples of such new literary characters are the protagonists of the books of Samuel Beckett,
Robert Musil, James Joyce, and Virginia Woolf, as well as Melville’s iconic Bartleby, the
Scrivener. It is interesting to see, in the opening lines of McDonagh’s chapter, how such changes
in the idea of personhood and self were apparent even for people living at the time.
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complexities of the modern identity, and in so doing enabled physicians to

perceive that new form of being, the autistic person, defined by an extreme
aloneness, apparent egoism, and an idiosyncratic use of language.” Further
factors that might have heightened the visibility of autism are the growth of
importance of psychological sciences and mass schooling, the convergent
effect of which was an increased attention and control over children’s per-
formances, as well as the “discursive field” for it (Davies, 2015, p. 202).
Between Kanner and Asperger, it was Kanner’s work which had initially
the strongest influence on medical understandings of autism, because
Asperger’s publication remained buried under the ashes of the Nazi regime
for several decades. Kanner was an Austrian psychiatrist who had studied in
Germany, but had moved to the United States in the 1930s. There he estab-
lished his lab and enjoyed a very fortunate career. Despite some accurate
descriptions that remain in use for autism diagnosis to date (Kanner 1943), his
contribution is controversial. He divulged the theory that autism was caused
by parental rearing practices and especially by the “refrigerator mother,”
disregarding evidence that did not support these claims among his own
patients; he also restricted the diagnosis to those children who appeared
profoundly disconnected from their social environment, and either did not
speak at all or used language in noncommunicative ways. Not surprisingly,
the syndrome was reputed to be very rare, as only about 0.5% of children
present the full symptom configuration Kanner had insisted on.
Asperger’s work was rediscovered at the end of the 1970s by Lorna Wing,4
an English psychiatrist with an autistic daughter. Unlike Kanner, Asperger
believed in the efficacy of interventions and worked with his collaborators to
develop educational strategies for autistic children (Asperger, 1940/1991). His
diagnostic criteria allowed more variation in terms of children’s language use
and social behavior, and included the possible presence of other strengths,
sometimes at exceptional levels. Wing, on the basis of Asperger’s paper and
her own observations, became convinced that heterogeneity was an intrinsic
characteristic of this condition, and coined the term “autistic spectrum” to
refer to such variability. However, because autism was by this time known as a
very frightening disorder, Wing thought that it might help parents to come
forward if a different diagnostic label were used for children who had less
evident manifestations (Silberman, 2017). “Asperger syndrome” was thus
born, to be included, alongside Kanner’s autism, in the fourth edition of
Diagnostic and Statistical Manual of Mental Disorders (APA, 1994).
The new label, which protected people from the worst associations of
autism, favored the development of the “Aspie” identity, a nickname and a
profile that came to identify someone, mostly male, with odd behaviors and

4
A further delay was caused by publishers’ resistance to printing Asperger’s work because he had
served under the Nazi regime. Eventually, Uta Frith managed to add a translation of
Asperger’s original paper in her 1991 edited volume.
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Clinical Psychology: Autistic Identities 467

poor social abilities, but above average skills in some specific area of interest.
Autism and Asperger were reunified under the same diagnostic category in
2013 with the fifth edition of the Diagnostic and Statistical Manual of Mental
Disorders (DSM 5), because the distinction introduced by Wing did not prove
diagnostically useful in the long run. In the twenty years that had passed,
medical and societal views on autism had changed substantially, so, although
not without some shaking within the community, the label of autism as such
could now offer an identity affordance that was not exclusively in negative
terms. It is also worth noting that, for the first time, autistic people contributed
to the revision of the Manual for the autism entry (Kapp, 2020).
While the diagnostic criteria in the most widely used classifications (like the
DSM 5, or the ICD-11)5 are still centered on social impairments and restricted
interests, research is turning to the peculiarity of the sensorial system
(Markram & Markram, 2010) and the neurological characteristics at the basis
of the difficulty in initiating behaviors (Muratori & Maestro, 2007; Trevarthen &
Delafield-Butt, 2013). Such new perspectives have led to the hypothesis that
social and communicative difficulties may not be intrinsic characteristics of
the condition (like an autistic withdrawal) but cascade consequences of other
impairments preventing developmental learning.6
Researchers agree overall on some general characterizations of autism that
are often also appropriated by autistic people as an aid for making sense of
what they struggle with. These are a predominance of local over global
coherence, e.g., attention and memory for details but difficulties with narrative
and synthetic discourse, and impairments in executive functioning, which is
involved in forming and executing plans (Frith, 2003). The shift from a
psychological to a neurological etiology,7 besides clearing the parental role
as regards the insurgence of the condition, also changed the understanding of
autism from a developmental disorder to a permanent disability, and with it
the emphasis from intervention as cure to forms of lifelong support instead.
We now turn to consider issues of identity in autism according to the three
areas outlined in the first part of the chapter.

21.2.1 Autism as Collective Identity, or “Groupness”

The component of identity that we can call “collective” or refer to as the
“groupness” aspect of identity includes both commonality and connectedness.

5
The International Classification of Diseases 11th Revision is the diagnostic manual developed
by the World Health Organization.
6
For example, according to the Theory of the Intense World (Markram & Markram, 2010) the
heightened intensity with which an individual experiences the social environment is the cause of
withdrawal and anxiety, not a lack of motivation for social contact and relations.
7
To date, research has not been able to confirm specific genetic factors or neurological anomalies
related to autism, because existing results are compatible with different hypotheses (Belmonte,
2008).
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Commonality captures the sharing of some common attributes, i.e., the fact
that a certain number of individuals can be labeled in the same way; connect-
edness indicates that those individuals are part of a network that gathers
around those attributes (Brubaker & Cooper, 2000, p. 20). Whether or not
people are actively taking part in common enterprises or gatherings, the
network is there as a possibility.
The history of the development of an autistic collective identity begins with
the initiative of parents of autistic individuals. Parents started meeting, and
getting to know each other, at conferences organized by medical or charitable
institutions; soon enough, frustrated by the dismissal of their experiences and
the lingering suspicions around bad parenting, they formed independent
associations and online discussion spaces (Silberman, 2017). These new
arenas, free of the control of the medical establishment, started then to see
the participation of autistic people themselves; this in turn led to the
creation of new spaces entirely managed by people in the spectrum, facilitated
by the diffusion of the Internet. The first Internet community entirely self-
managed by autistic people was Independent Living (InLv), founded in 1996
(Dekker, 2020).
These new spaces were instrumental in producing discourses subverting not
only the idea of autism as a disastrous condition but also as a development
disorder that would disappear with the right treatment. One of the first figures
to acquire prominence in the emergent autistic communities was Jim Sinclair.
His conference presentation and autistic manifesto “Don’t mourn for us”
(1993) challenged the discourses of children lost to autism and grieving
parents, and built the pillars of the autistic collective identity that would
develop in the following years. A key point that Sinclair insisted on was that
autism is constitutive of the person, not something added to, or corroding,
their personality:

Autism is a way of being. It is pervasive; it colours every experience, every

sensation, perception, thought, emotion, and encounter, every aspect of
existence. It is not possible to separate the autism from the person – and if it
were possible, the person you’d have left would not be the same person you
started with. (Sinclair, 1993, p. 5)

This point is consequential because it means that autism is not attached to a

person as something to be hidden or get rid of, but something that people
should be open about and recognize for what it contributes to one’s way of
being. A second key point of Sinclair’s paper countered the idea that autistic
people lack interest in social relations. Sinclair in fact turns the claim on its
head, and denounces the failure of nonautistic people to notice the efforts in
their direction:

Autism is not an impenetrable wall . . . Yes, that takes more work than
relating to a nonautistic person. But it can be done – unless nonautistic people
are far more limited than we are in their capacity to relate. Each of us who
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does learn to talk to you, each of us who manages to function at all in your
society, each of us who manages to reach out and make a connection with
you . . . We spend our entire lives doing this. And then you tell us that we
can’t relate. (Sinclair, 1993, p. 12)

This point also has important implications in terms of the autistic collective
identity. First, it proposes and makes salient an “us,” a population of individ-
uals engaged in the same endeavor of getting by in a world not designed for
them, and a “you,” the rest of society, who systematically misunderstand
them. Second, it undermines one of the most otherizing descriptions of autism,
that of people who lack the basic feature of humanness, which is sociality.
Third, it opens the space for a sociality internal to the group itself, which will
continue to flourish in years to come.
Sinclair’s activism, it is argued, laid the foundation for the neurodiversity
movement (Pripas-Kapit, 2020), which is perhaps the most influential incar-
nation of autistic advocacy at present. The first use of “neurodiversity” is
credited to Judy Singer, an InLv member who drew on the group’s discussion
in her academic work; the term was later popularized by the American
journalist Harvey Blume (1998). The concept of neurodiversity is inclusive
of all variations in the wiring of human brains. Its basic assumption is that
variability is the norm and people who have different neurological assets will
contribute to society and humanity in general according to their particular
capacities and specialties. Singer was inspired by the notion of diversity in
ecosystems, i.e., as a factor promoting health, with adaptive value for the
species (Singer, 2019). In its principles and objectives, the concept is similar to
that of Universal Design (Preiser & Smith, 2011), arguing in favor of shifting
the focus from the disabled person and their specific problem to how the
material and social infrastructure of society can accommodate as many people
as possible.
As such, the term neurodiversity indicates an indisputable fact, i.e., that
every person is neurologically different, and some argue that for this reason it
is ultimately meaningless (Valtellina, 2018). Moreover, the neurobiological
emphasis of the word can sound reductionist and exclude considerations of
culture and politics in the creation of diversity. However, the movement going
under this name has a propulsive force, and is also reaching beyond the
specific condition of the people who started it to join forces with other
“neurodivergent” groups (e.g. people with ADHD, dyslexia, or even progres-
sive degenerative brain conditions) (Kapp, 2020). Advocating for the value of
diversity is not an abstract proposition, but implies fighting for conditions that
would guarantee full participation, autonomy, and the support that can enable
these goals. The inclusive value of the neurodiversity movement is also dem-
onstrating a sort of moral leap forward: in the first decades of their existence
as a group, the autistic community used the term “neurotypical” to denote
the strange habits and attitudes of nonautistic people, with a clear critical
slant and resulting in the creation of a binary opposition. The concept of
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neurodiversity instead erases such barriers and invites everyone to apply a

compassionate and inclusive outlook to variation in cognitive strengths and
weaknesses, including everyone, as Robinson (2019, p. 3) writes, who may
“see themselves as both gifted and disabled.”
The neurodiversity movement is not a single group or organization and has
no leader. It is a banner that can be endorsed by politically active groups, and
a label that can make autistic people and their family members feel proud and
empowered. The collection of accounts in Kapp’s (2020) edited book testifies
to the great variety of paths and forms of activism of people who recognize
themselves in the movement.
The autistic community is vocal, active, and diverse, and the debate about
each new term with its renewed implications and political agendas is always
vibrant, sometimes heated; the same goes for “neurodiversity” and “neurodi-
vergent.” However, the arc of autistic identity is remarkable; autistic people
and their families took the condition away from its understanding as a
developmental disorder – a children’s problem in which the protagonists were
talked about by others and infantilized – and made it into a frontline move-
ment that speaks out for all kinds of diversity and disability. It is also an
educational story about identity: the element of separateness that can foster
sentiments of belonging – on whichever attribute it is based on – can fuel a
group’s collective action, but the dynamic that is generated can ultimately take
the group beyond the boundaries of its own.

21.2.2 Autism Identifications

I’m not geek chic. And I’m not the Rain Man. I’m not the astrophysicist or
the train spotter. I’m not without speech. But sometimes I like to sign. I am
an artist, not an engineer. My special interest is people, not machines. Is it any
wonder that growing up it never occurred to me to consider that I might be
a duck? (Lloyd-Williams, 2016)

We reconstructed in the previous section how autism has become the name for
a collective, a category in the name of which people can carry out concerted
actions. In this section we will discuss the streams of discourse and action that
contribute to socially shared images of autism and reflect the way ASD-
diagnosed individuals interpret their relation with the condition.
As Brubaker and Cooper (2000, p. 14) note, speaking of identification
(rather than identity) “invites us to specify the agents that do the identifying.
And it does not presuppose that such identifying (even by powerful agents,
such as the state) will necessarily result in the internal sameness.” The agents
can thus be impersonal, anonymous discourses or public narratives with the
power to shape social encounters. Processes of identification can include
the intellectual as well as the emotional relation to a label or category, and
has the advantage of making space for ambivalence or apprehensions that are
not fully articulated (see also Cameron & Kulick, 2003 and Kulick, 2005).
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Early Autistic Narratives

Two clusters of ideas shaped the public understanding of autism, one derived
by Kanner and subsequent medical interpretations, which defined the autistic
person as unmotivated to engage in social relations and incapable of experi-
encing affective relationships,8 to the point of psychopathy (Kapp, 2020); the
second, as we saw, the discourse of “cure” that permeated the medical and
research culture for most of the twentieth century (exemplified by charities
with names like Cure Autism Now). Beside spreading rumors of alternative
remedies based on diet or avoidance of vaccines, this discourse also informed
the first autobiographies of autistic people, such as Temple Grandin (Grandin
& Scariano, 1986) and Donna Williams (Williams, 1992/2009). These auto-
biographies were written when Grandin and Williams were adults, the first
with a successful career as a mechanical engineer for livestock equipment, the
second making a living as an artist. Both works are remarkable and offer
insights into the sensory, emotional, and intellectual experience of growing up
with autism; according to many voices in the autistic community, though, they
were aligned with the “cure” agenda, feeding into parental hopes for the
autism to go away from their children and endorsing organizations financing
that kind of research rather than lifelong support. The two narratives, that of
isolation and that of cure, are in fact holding each other up, since if the first is
true, then autistic people who appear to be able to be in touch with the
external world beyond their restricted sphere of interest must have somehow
“emerged.” The prevalence of such narratives and their support from the most
powerful organizations at the time meant that voices trying to tell a different
story were marginalized.9 Today, the autistic community rejects the idea of
cure as getting rid of autism, favoring types of childhood interventions that
facilitate intersubjectivity and social interaction by approaching the child on
its own terms (Milton, 2014a).
There is an aspect of the cure narrative that has more to do with the
discourse genre itself, i.e., the difficulty of structuring a narrative in which
the initial problematic circumstances do not change into a more positive
outcome for at least one of the characters (Osteen, 2008). As argued before,
in the 1980s the fact that Grandin and Williams were able to tell their stories
was synonymous with having been cured, even though, reading their auto-
biographies with a contemporary sensibility, an intertwined counternarrative
is revealed, that of “creativity emerging from within autism” (Osteen, 2013,
p. 274) rather than because of it; both authors in fact describe how autism

8
Even Oliver Sacks’s (1995) sympathetic account of Temple Grandin’s story ends with words
that hint at Grandin probably being incapable of loving her mother.
9
Sinclair was ostracized for speaking against these views; he could not find a permanent job,
despite being qualified and at work in counselling, and was not granted the same visibility as
Grandin and Williams, despite growing public interest in autism (Pripas-Kapit, 2020).
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bestowed on them a different way of perceiving and reasoning which had been
instrumental to their personal and professional development.
Some of the initial stories by parents also adopted the narrative of trans-
formation, only it is the parent’s own journey that is depicted. Osteen points
out how the autistic person becomes here a “prosthesis” for the main character
to develop. However, there are stories told by family members that embrace
the narrative with no resolution, instead offering sketches of the life shared
with the person with autism, like the father’s account in Running with Walker
(Hughes, 2003) or the brother and sister’s mix of text and drawings The Ride
Together (Karasik & Karasik, 2003). These types of stories, which might be
called “care narratives,”10 ultimately show how full acceptance is the only
way, but do not hide the challenges and the uneven path that families go
through; perhaps it is telling that both the books cited as examples of this
approach have in their title an image of “moving with,” a sense of “going
along” with the person with autism rather than trying to steer them away from
the condition.
As McGrath (2017), an autistic author, also notes, the narrative gestalt does
not always come natural to autism; in a way, a coherent and compact story
line would betray the nature of the autistic intelligence. Osteen (2013) gives
many examples literary or filmic strategies to reflect a different organization of
content, made up of different intersecting perspectives and micronarratives
that illuminate particular experiences. Autobiographical narratives from aut-
istic people also show ways of telling personal stories without a resolution,
realizing narrative tension and literary value in depicting the vicissitudes of
their different subjectivity. Many of those accounts are explicitly about autism,
displaying the commitment of autistic people to explaining themselves and
attacking the most resistant prejudices. Exemplary in this regard is thirteen-
year-old Naoki Higashida’s The Reason I Jump (2007/2013), organized in
question/answer short chapters in which he explains types of behavior that
puzzle nonautistic people. Frequently, as time goes on, what had been an
undercurrent in Grandin’s and Williams’s stories became central in later
autobiographies, i.e., how autism shapes a person’s assets and abilities.
Dawn Prince-Hughes’s Songs of the Gorilla Nations (2004) is subtitled “My
Journey through Autism,” but it is also a startling depiction of her friendship
with gorillas in Woodland Park Zoo in Seattle, her discovery of intersubjec-
tivity through that relationship, and how the sensitivity that allowed that bond
to form shaped her future career and life (she will become an anthropologist).
In the more recent Diary of a Young Naturalist by Dara McAnulty (2020),
autism is not foregrounded per se but becomes apparent through the inter-
action between the young man and the natural and social world. The diary
format short-circuits the problem of a progressive narrative, and the reader,

10
The author wishes to thank Michael Bamberg for the suggestion.
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Clinical Psychology: Autistic Identities 473

sharing the day-to-day life of McAnulty’s family of five (all autistic except the
father), gradually comes to inhabit their sensibility and worldview.
Poetry is a medium well suited for conveying the particular relationship to
the external world that a different sensoriality allows (cf. for example
Limburg, 2017), and also for capturing the way language can impose images
and connections over ordinary meaning (a much-cited poem in this respect is
“The Tune on Your Mind,” by acclaimed Australian poet Les Murray).

Fictional Autism
Fiction is also an important source of general knowledge and imagery about
autism. The enormously influential film Rain Man (1988) was for many years
the only representation the general public could attach the label autism to
(Silberman, 2017). The film has many merits, not only artistic but also in
generating awareness and acceptance of autism; still, it represents someone
with idiot savant abilities who needs to live in an institution. In the first two
decades of the twenty-first century, there has been an exponential increase in
novels, TV series, and films with autistic protagonists who have jobs, relation-
ships (albeit complicated), and who can use their skills profitably (e.g. The
Syndicate, The Bridge, and The Curious Incident of the Dog in The Night-
Time). Such exposure has increased awareness and acceptance of the condi-
tion, and has even helped people who grew up without a diagnosis recognize
the source of their difficulties. Several critics have noted, however, that these
products also consolidate new type of autistic narratives and tropes, that of the
genial eccentric figure with skills in the area of science and technology (Osteen,
2008; McGrath, 2017). The fact that often in such fictions the autism of the
character remains implicit (sometimes appearing only in the paratext adver-
tising them) can further obfuscate the life experience of people in the spectrum
for the general public. More specifically, McGrath (2017, pp. 176–177) sees
the problem in the fact that this choice “severely restricts the possibilities of
how a narrative or script might critically acknowledge this condition as an
experience, an impairment, a disability, a diagnosis, and a social label,”
“undermine[s] the reality that autistic adults may need to talk about this
subjectivity and identity,” and “evade[s] addressing the condition as a disabil-
ity, because the health and lifestyles of these characters are seldom signifi-
cantly impaired by autistic tendencies.” Writing from an autistic standpoint,
McGrath evaluates positively fiction, such as that of Morrall (2008) or
Wolitzer (2013), that represent autistic subjectivities in a credible way, for
example showing how autistic traits – with less drive toward conformity or
inflexible thinking patterns in some areas – may give rise to diversity more
than sameness among the population of people with autism. Finally, McGrath
notes the absence in fiction of the pivotal moment of diagnosis, despite its
cataclysmic effect on a person’s sense of self and public identity, as illustrated
in the last section of this chapter.
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Cultural Playfields
Like many groups with a minoritarian collective identity, autistic communities
around the world also share preferences, mythologies, and iconic cultural
expressions that are syntonic to their experience. To mention just a few
examples, Schwarz (2008) explains how films can support processes of autistic
identification; McGrath (2017) shows how E. M. Forster’s novel Howards
End, The Who’s 1969 album Tommy, and the Michael Andrews/Gary Jules
song “Mad World” may resonate with autistic members of the audience, even
if they are not about autism. There are cultural worlds related to fandom and
the related practice of cosplay – wearing costumes of favorite fiction charac-
ters – in which many people with autism meet, play, and produce their own
literature. The latter practice, called fan fiction, consist in creating new epi-
sodes and side narratives based on fantasy literature or animation. In the
liminal space of fantasy worlds, themes that are key to a person’s self-
discovery can be elaborated, such as social difficulties, sexuality, and autism
itself (for a personal account, see Poe, 2019; for an ethnographic study on role-
playing games in autism, see Fein, 2015).

Deconstructing and Reconstructing Scientific Narratives

The relationship of the autistic community with the descriptions produced by
scientific research is complex. On the one hand, science can offer explanations
for the discontinuity between their experience and that of others, and a
vocabulary to go with those. People with autism often refer to their trouble
with theory of mind or executive functioning in reporting some of their issues
in everyday life. On the other hand, for decades autism has been framed in
experimental research almost exclusively in terms of deficits. Headline-
grabbing descriptions evoking “zero empathy” (Baron-Cohen, 2011), lack of
imagination (Craig & Baron-Cohen, 1999), and a weak sense of self
(Lombardo & Baron-Cohen, 2010) make it harder to build a public persona
around being autistic. Many descriptions plainly do not match what can be
easily observed in the achievements of autistic people; famously Sinclair
(1992, p. 1) starts his “Bridging the Gaps” paper by recalling that “In May
of 1989 I drove 1200 miles to attend the tenth annual TEACCH conference,
where I learned that autistic people can’t drive.” Experimental comparison
between people – most often children or youth – with autism and with typical
development perpetuate understandings in terms of haves and have-nots
rather than exploring genuine diversity and solutions devised via alternative
routes. Another consequence of the broad-brush descriptions that for a long
time were considered the ultimate science on autism covered up rather than
furthered knowledge about autistic realities: the unempathic, uncaring,
unimaginative profile that captured media attention made the autism of many
people – caring parents, artists, women – invisible and their claims distrusted.
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Clinical Psychology: Autistic Identities 475

Networks such as Critical Autism, whose members are autistic and non-
autistic scholars and practitioners, promote awareness of the limitations of
deficit-only accounts and try to offer complementary information, while also
highlighting the sociocultural forces shaping dominant versions of autism
(Woods et al., 2018; Kapp, 2020). Central to such networks is the identifica-
tion of research practices that produce descriptions of autism that more
faithfully represent the heterogeneity and the lived experience of autistic
people (Milton 2013, 2014b). If research has been until recently conducted
mostly with a third-person perspective, i.e., with the autistic participants as
experimental subjects, first-person and second-person perspectives are pro-
moted in these circles. First-person research goes from autoethnographic
accounts, on academic (Yergeau, 2013) or non-academic platforms,11 to
phenomenological research that uses those accounts to understand the nature
of self-processes and embodied experience (Fletcher-Watson et al., 2019;
Boldsen, 2018). Second-person research can look at the mutual influences in
conversation between autistic and nonautistic people (Fasulo & Fiore, 2007;
Sterponi, de Kirby, & Shankey, 2015; Sterponi & Fasulo, 2010), or carry out
participatory research that builds research expertise in autistic participants in
order to arrive at findings as a merging of perspectives (Fletcher-Watson et al.,
2019). Descriptions of autism produced with such approaches are, among
other things, mor syntonic with the experience of people in the spectrum,
while making identifying as autistic less socially threatening.

Autistic Vocabularies
The autistic community is active in shaping the language autism is spoken by.
This is done by creating new terms and formulas, or through “appropriative
practices” (Blommaert & Rampton, 2011, p. 29) that reclaim, with a twisted
meaning, expressions that were born out of different groups and agendas.
Person-first language (i.e., “people with autism”) was one of the first prac-
tices spoken against with regard to autism, as it implies the representation of
autism as disease, something attached to the person but not constitutively part
of it (Sinclair, 1999; Pripas-Kapit, 2020).
The terminology of “high-functioning” and “low-functioning” autistic
people, which was used sometimes in parallel, sometimes in overlap, with
the nomenclature “Asperger” and “classic autism,” essentially referred to oral
language proficiency, and has been deemed an arbitrary and damaging classi-
fication (Kapp, 2020). Firstly, it poses limits to what a person can achieve,
with many autistic biographies showing that borders are continually tres-
passed by people diagnosed in childhood as low-functioning; secondly, it

11
Examples of nonacademic accounts are the pieces on the Flash Blog This Is Autism (http://
thisisautismflashblog.blogspot.com), as well as the blog by the cited playwriter Lloyd-
Williams, Autism and Expectations: Demystifying Autism (autisrhi.com).
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perpetuates the focus on oral linguistic abilities that has led to the systematic
underestimation of autistic people’s level of literacy, which is typically
higher in reading and writing than in speech; finally, coexisting low- and
high-functioning areas are the norm in autistic individuals, as well as
uneven performances in the same area under different circumstances.12
A growing section of the scientific community now accepts heterogeneity
and constant developmental changes as one of autism’s defining characteris-
tics (López, 2015).
A powerful metaphor and relative terminology that has long informed
reciprocal attitudes between autistic and nonautistic people is that of the
“alien” (Hacking, 2009a). The word was used in Hans Asperger’s original
publication, and the image was popularized by Oliver Sacks’s catchy title An
Anthropologist on Mars (about the story of Temple Grandin). The image of
the alien has often been adopted by autistic people themselves to render their
failure to comprehend the way nonautistic people behave. Initially, the meta-
phor lingered in the coinage, within autistic circles, of the term “neurotypical”
and the in-jokes around “otherizing” descriptions of nonautistic behavior:
We had a bit of fun with it; tongue-in-cheek terms like “neurotypical
syndrome” and “social dependency disorder” were thrown around . . . As we
were so used to being misunderstood, patronized, and pathologized, it was a
relief to have the shoe on the other foot. (Dekker, 2020, p. 45)

The use of the term “neurotypical” had the effect of denaturalizing normative
social behavior and constituting an outgroup that strengthened the bonds
within the autistic group. However, as autistic advocacy developed conceptu-
ally and started to promote the notion of neurodiversity (see the earlier
section), the contraposition of the neurotypical and the otherworldly autistic
is leaving the arena for a more nuanced concept of a continuum of diversity
across all humans (Kapp, 2020).
Autistic contribution has also been rich in visual culture; to give but one
example, the image of the “puzzle,” which had been a metaphor of autism
with negative connotations (it was used in the logo of the National Autistic
Society, with a crying child inside the puzzle piece), has been reappropriated in
artistic projects that stress the ability of autistic people to invent themselves
(see Figure 21.1).
The metaphor of the self-completing puzzle is ideal for leading to the last
domain of this review, that of identity as self-understanding and self-
invention. Before doing that, though, it must be mentioned that if the territory
of autistic identifications is mainly contested by media, science, and autistic
advocacy groups, the problem remains of how to voice autistic people who are

12
This was a point Asperger (1940) had much insisted on, especially in relation to the unreliabil-
ity of formal assessments, and it is also the rationale for Lorna Wing settling on the word
“spectrum” rather than “continuum” (Silberman, 2017).
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Clinical Psychology: Autistic Identities 477

Figure 21.1 Sarah E. Vaughn, Self Portrait, © Sarah E. Vaughn

unable to join the public debate. While they have citizenship in the
neurodiversity movement, their different circumstances mean that we know
less of their relationship, and indeed acceptance, of the condition as part of
who they are (Osteen, 2008). Lastly, we also still know little about how autism
is impacted by social class and in general less privileged or minority positions
in society (Davies, 2007).

21.2.3 Autistic Self: A Work in Progress

The third area that Brubaker and Cooper (2000) propose to dissolve the term
“identity” into is “self-understanding.” By this term they isolate uses of the
word that refer to individuals’ subjective sense of who they are and where they
are socially located. Such understandings are not related, as for the identifica-
tion processes that we just discussed, with discursive positions shaped by
cultural forces; rather, they mean the experience and awareness of one’s way
of being and how that influences day-to-day actions and choices (Brubaker &
Cooper, 2000, pp. 17–19). This area is of the utmost interest in autism, and
easily one of the greatest opportunities psychology has ever had for advancing
its knowledge of how the self is created and sustained.
As McDonagh (2008, p. 105) reminds us, Asperger himself had hypothe-
sized a core experiential difference in autism: “Behind the originality of
language formations stands the originality of experience. Autistic children
have the ability to see things and events around them from a new point of
view, which often shows surprising maturity” (Asperger, 1940/1991, p. 71).
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How can we, though, get access to such experiences if not only are they
discontinuous with those of others, but the language itself that could be used
for describing them may not map onto that used by nonautistic people
(Hacking, 2009)?
The differences in self-experience may result not only in a divergent neuro-
biological setup, but also in the consequences that those may have down the
line. For example, how do the first stages of self-development occur when,
from infancy onward, the physical boundaries of one’s own body are not
always perceived, embodied agency is not always present, and the success of
interpersonal communication not guaranteed? How does the sense of a coher-
ent self-stabilize when narrative discourse is problematic?
Experimental research has gone down the deficit route in the area of the self
as well, with paradoxical findings about both a weaker sense of self and a
heightened egocentricity in people with autism (Lombardo & Baron-Cohen,
2010); because the research is again comparing autistic and nonautistic
groups, the findings do not illuminate any specificity in the landscape of
autistic self-understanding (see Fasulo, 2019 for a review).13 From clinical
sources and autobiographical accounts, however, at least three distinct areas
of interest emerge. First, there are the negative self-attributions that derive
from the clash with the peer group and the social world at large, particularly in
individuals who do not get a diagnosis until late in their youth or adulthood.
The constant sense of not fitting in, the communication breakdown, and often
traumatic experiences of marginalization and bullying can make self-
understanding elusive, fragmented, and lacking the sense of compactness
and continuity that derive from sharing experiences with others and having
them confirmed. Stress can lead to stress-release behaviors, which in turn can
make the autistic person seem even more odd and pathological. For example,
in Lloyd-Williams’s words (2016):
I was so tired all the time, but that’s not the label you get. You don’t get
“tired.” You get lazy . . . If other people aren’t tired, then they must be right.
I must be lazy. I’m bad. Which makes me sad and I can’t chase the sadness
away by watching the shadows the light casts on the ceiling. It only fades
when I bang my head on the wall. I wonder if I’m mad. That’s the sort of
thing crazy people do. (Lloyd-Williams, 2016)

Applying categories of self-understanding from outside in, as in the quote

above, can determine a sense of self-estrangement and the lack of a unified
sense of self that is often redressed when obtaining a diagnosis. This is why the
diagnosis is such a pivotal moment, its value linked both to self-understanding

13
Zahavi (2010) identifies two main issues with experimental research on self in autism: first, the
conflation of the ability to access one’s mental states with that of verbally reporting them; and
secondly, the absence of robust theorization about the self behind experimental setups. From a
philosophical point of view, Zahavi argues in favor of organizing the inquiry along the distinct
areas of experiential, interpersonal, and a narrative self.
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Clinical Psychology: Autistic Identities 479

and to public announcements that will free the person from stigma (Bagatell,
2007). Here is an account of the moments after a diagnosis has been delivered:
Sitting in my car in the parking lot after the last session, I felt an immense
wave of relief wash over me as everything suddenly made sense. I looked back
over my life, perhaps the way people do before they die, and thought of all the
painful memories that could now be explained. Like someone making amends
in a twelve-step program, I almost felt compelled to contact everyone who
had ever been impacted by my autism – whether positively or negatively –
and explain. (Prince-Hughes, 2004, p. 174)

The diagnosis retrospectively makes things fall into place and frees the person
from the responsibility for their difficulties. The process of creating a novel
autobiographical narrative goes beyond redressing the negative self-
attributions collected over the years; it can recast family relations and family
lore about certain characters, and rewrite history backward. Such processes of
reinterpretation still need to be investigated, including in terms of what differs
when the diagnosis arrives at different ages (Fasulo, 2015).
A second interesting factor in self-understanding in autism is the bricolage
nature of the self-understanding and self-presentation that transpires in many
personal accounts. The self, at least according to certain psychological theori-
zations, is an illusion created by convergent psychological processes; such self-
projections are mutable, but are bestowed unity by the same apparatus that
generates them in the first place (Metzinger, 2003). In autism, fascinatingly,
such illusions of unity and continuity do not always hold. If most typical
people fabricate a self out of cultural suggestions, such borrowings seem in
some cases to be less naturalized for people with autism, as if the memory and
attention to details meant that the heterogeneous sources stay pristine in the
interior psychological space, the different voices remaining distinct. For
example, there are accounts of conjuring up a language for self-expression
by borrowing material from pieces of TV programs and even advertisements
(Williams, 1992), or from historical figures and personalities (Fasulo, Hunt &
Isadore, 2015). Similarly, for young people, fictional characters can represent
narrative shells onto which to mold a narrative persona. Reasons for such
fragmentation in the self as experienced and presented are probably manyfold,
but there are clues pointing to the scarcity of joint narrative interactions, from
early infancy (Delafield-Butt & Trevarthen, 2015) and throughout life,14 that
may mean individuals resort to more idiosyncratic and less socially shared
ways of constructing a self. A key role may be also played by the difficulties
in establishing meaningful sentimental relationships, which in people
with typical development inaugurate extensive processes of self-inquiry and

14
The analysis of narratives of an autistic middle-aged man during counselling (Fasulo, 2019)
showed a limited reliance on the conversational partner for the joint evaluation and conclusion
of autobiographical episodes that Conversation Analysis demonstrated as the norm in per-
sonal storytelling (Sacks, 1992).
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self-disclosure; Prince (2013) explicitly thematizes how she felt she had a
collection of disparate social personae before this biographical disjuncture
was recomposed through lengthy discussions about her feelings and percep-
tions with her first serious partner.
A third and final aspect that for me stands out – although there are surely
others I may be overlooking – is the area of self-understanding that has to do
with the perceived connections between the body and the external world,
especially the natural world. In drawing a parallel between people with autism
and the American native Navajo culture, Kapp (2011) notes the felt connec-
tion with animated and inanimate beings and the ability to find beauty and
harmony in the natural world that unite both groups. From Grandin’s
uncanny understanding of cattle to Prince-Hughes’s communication with
gorillas, to McAnulty’s and Thunberg’s sense of personal involvement with
nature and its preservation (Grandin, 2006; Prince-Hughes, 2004; McAnulty,
2020; Thunberg et al., 2020), there are many accounts that speak of a transi-
tional self in which the boundaries between self and the exterior world are
permeable, and therefore the individual feels engaged and preoccupied with
the well-being of the environment. As in most things concerning autism, the
same property that may be at the origin of difficulties – in this case altered
proprio- and enteroceptive sensations – may be also creating at a psycho-
logical level an enriched ability of tuning in with nonhuman beings
(Davidson & Smith, 2009). Rather than lack of empathy, it seems that for
many autistic people there could be a widened commonality with the world of
animate and inanimate objects, which could further dig a separation with
fellow humans who demonstrate indifference toward other beings.

21.3 Conclusions
Understanding an identity that was born as a medical diagnosis and
has become a narrative trope means following a dance in which all parts
continuously change position and move each other along. It is common for
all types of identity research to acknowledge the interdependence of their
subject matter with cultural movements and socio-economic forces; however,
autism can illustrate the complex interplay of such influences while also
constituting a good case in point for the separation of different strands
of research.
The very history of autism as a nosological category shows that changes in
society prepared for the recognition and denomination of the syndrome; from
the initial understanding exclusively in medical terms – disease and cure – the
meaning of autism has been contested by advocacy movements fighting for its
recognition as a permanent condition that needs to be managed, and not
fought out of the person. From the beginning, autism reclaimed as a collective
identity fostered the more radical shifts in the way the syndrome was to be
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Clinical Psychology: Autistic Identities 481

talked about for generations to come. As these changes occurred, societies in

the Western world developed a fascination with autism which meant that
identity affordances were created – through processes of identifications –
especially around the Asperger profile. The explosion of mediatic attention
revealed how a novel cultural object can be affected by conventional means of
representation; the canonical narrative curve imposed a resolution on stories
that did not have one, and the heterogeneity of the condition was sacrificed to
the shaping of a literary and cinematographic type: the aloof but genial
individual, perfect candidate for detective dramas and troubled love affairs,
but without much learning for the audience in terms of what being autistic can
feel like. Autistic people themselves enter the arena of identifications not only
with their autobiographies, but also with literary criticism, scientific inquiries,
and the creation of networks in which the cultural work of autism-making is
reflexively examined and exposed. Finally, we have discussed autistic identity
as self-understanding. Being at odds with society and having different patterns
of bodily sensations can generate types of subjectivities that we still know very
little about, and antiquated psychological research approaches based on one-
to-one comparison with nonautistic individuals have not yet stepped up to
the challenge.
The work of autistic scholars and those with a critical disability approach
promote innovative research paradigms that, starting from what autistic
people have to say about their own condition, can build an understanding of
autism in its own sake, and also develop instruments for lifelong support;
approaches that are less about deficits and impairment can ultimately build an
enriched identity and create a welcoming environment for newborns into
autism and for their families.

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