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What’s in a flap? The curious history of autism and hand stereotypies
Rozanna Lilley
roselilley@fastmail.fm
Keynote address at the Neurosocieties Symposium: Explorations of the brain, culture,
and ethics, Monash University, 25 August 2017.
Abstract: Since the inception of autism as a diagnostic entity in 1943, hand-flapping
has featured in the clinical and therapeutic literature as one form of motor stereotypy
often seen in people on the spectrum. Various interpretive frameworks have been used
to explain hand stereotypies, including psychoanalytic, behavioural, neurological and
sensory approaches to understanding why individuals twirl, flap and stim. In this talk,
I ask what is at stake in these different understandings of hand-flapping and their
consequences for therapeutic modalities? In particular, autistic self-advocates have
pitted themselves against behaviourist efforts to reduce or eliminate ‘stimming’. The
frequently stark division between a politics of autistic neurodiversity and ongoing
efforts to regulate and control autistic bodies is played out, I argue, in the moving
image of the flapping hand, which has become a synecdoche for the discomforts,
tensions and possibilities generated by competing claims about autism.
My focus in this talk is one repetitive body movement – hand-flapping – and its
association with autism. Hand-flapping has been theorised in various ways within
different disciplinary frameworks. A range of ideas have been put forward attempting
to explain why individuals flap their hands, as well as how to suppress, manage or
control this behaviour. Attempts to understand the causes and functions of hand-
flapping allow us to trace the contours of divergent disciplinary understandings of,
and investments in, autism, including psychoanalytic, behaviourist, sensory and
neurological perspectives. Each attempt to explain these repetitive movements has
directly moulded therapeutic recommendations and actions. These various therapies
continue to be enacted even as some autistic activists object to the ways in which
hand-flapping has been both conceptualised and treated.
In more recent decades, a growing body of writing as well as videos authored by
people diagnosed with autism has reacted against these efforts to manage or suppress
hand-flapping, arguing that it is both pleasurable and a form of authentic interaction
with the world. Such objections often deploy the language of neurology in arguing for
the acceptance of autism, and its associated bodily expressions, as a valid
phenomenological difference that should be respected. The frequently stark division
between a politics of autistic neurodiversity and ongoing efforts to regulate and
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control autistic bodies is played out, I argue, in the moving image of the flapping
hand, which has become a synecdoche for the discomforts, tensions and possibilities
generated by competing claims about autism and the ethics of therapy.
Clinical classifications
In current medical parlance, hand-flapping is categorised as a motor stereotypy. The
term ‘stereotypies’ includes a very diverse range of movements and behaviours that
are repetitive and appear to lack a clear purpose or function. They have largely been
conceptualised as having a negative impact upon the individuals engaged in the
behaviour and, to some extent, others in their immediate environment. Indeed, the
idea that motor stereotypies interfere with adaptive function is integral to their
conceptualisation and consequent differentiation from common mannerisms (Barry et
al. 2011). They are also distinguished from tics, which are sudden, non-rhythmic and
often described as being preceded by a premonitory urge. Stereotypic behaviours
include body rocking, head banging, hair twirling, pacing, humming and so on. In the
past, these movements have sometimes been known as ‘blindisms’ or ‘autisms’
because of their particular association with these conditions (Lovaas, Newsom &
Hickman 1987). Goldman and colleagues provide a table detailing the many types of
movements that may be included as motor stereotypies.
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Table 1. Types of stereotypies (Goldman et al. 2009: 32).
Restricted, repetitive patterns of behavior, interests, or activities (RRBs) are,
alongside persistent deficits in social communication and social interaction across
multiple contexts, a core feature of autism spectrum disorders (ASD). The American
Psychiatric Association’s (2013) Diagnostic and Statistical Manual, Fifth Edition
(DSM-5), which is widely used to standardise diagnostic criteria for autism, groups
together ‘stereotyped or repetitive motor movements, use of objects, or speech (e.g.,
simple motor stereotypes, lining up toys or flipping objects, echolalia, idiosyncratic
phrases)’ as one of four possible manifestations of this core feature. Two of these
manifestations of RRBs must be present to qualify for the diagnosis. In other words,
motor stereotypies can contribute to an ASD diagnosis but are not necessary to
achieving one
Clinicians agree that, while motor stereotypies are nonspecific to autism, persistent
stereotypic behavior in the second year of life is a ‘red flag’ for ASD diagnosis (Bhat,
Landa & Galloway 2011: 1120). Arm and hand/finger movements are sometimes said
to be especially suggestive of autism (Goldman et al. 2009: 35). Although stereotypic
behaviour is associated with autism it is also perfectly normal in the course of
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childhood development (Freeman 2015: 125). It is also associated with intellectual
disability (ID) and with visual impairment as well as with a range of
neurodevelopment disorders, including Rett syndrome, neurodegenerative disorders
and some psychiatric conditions (Barry et al. 2011: 980). The working assumption
across all of these instances has been that motor stereotypies are a sign of a broadly
dysfunctional brain (Goldman et al. 2009: 30).
Origin stories
The inclusion of motor stereotypies as potential diagnostic markers of autism can be
traced back to two texts that are foundational to the construction of autism as a
clinical category. The first of these is psychiatrist Leo Kanner’s 1943 article Autistic
disturbances of affective contact. This article described eleven children who shared
high intelligence, and a ‘powerful desire for aloneness and sameness’ (Kanner 1943:
249). He suggested that these characteristics formed a ‘unique syndrome’ not well
served by the existing taxonomic categories of either feeblemindedness or childhood
schizophrenia that were being applied in such cases.
Kanner noted a number of motor stereotypies. For instance, one of the children,
known as ‘Donald T.’, was described as wandering about smiling, ‘making
stereotyped movements with his fingers, crossing them about in the air’ (Kanner
1943: 219). Kanner continues: ‘He shook his head from side to side, whispering or
humming the same three-note tune. He spun with great pleasure anything he could
seize upon to spin’ (Kanner 1943: 219). He put forward a number of explanations for
this behaviour. The repetition was viewed as attributable to a dread of change that
limited the variety of spontaneous activity. He described this as ‘an anxiously
obsessive desire for the maintenance of sameness’ (Kanner 1943: 245).
The evident enjoyment that Donald T. and some of the other children discussed
derived from engaging in motor stereotypies presented an interpretive difficulty. The
solution came in the explanation that the children exercised power over their own
bodies through rhythmic movements. Their actions and ‘accompanying ecstatic
fervour’, Kanner posited, indicated the presence of ‘masturbatory orgastic
gratification’ (Kanner 1943: 246). Anxiety and ecstasy were, it seemed, willing
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partners. In fact, everything the eleven children did and said was interpreted as
evidence of their inborn inability to form affective contact with others. Motor
stereotypies may, on this reading, be a source of pleasure but that pleasure is born of a
solipsistic desire to preserve aloneness. We can see here, how, via Kanner’s unifying
interpretive sleight of hand, so many potentially disparate items came to be classified
together as restricted and repetitive behaviours in the current DSM-5.
I turn now to the other text most often taken to be constitutive of autism as a clinical
category — Austrian pediatrician Hans Asperger’s (1944) article Autistic psychopathy
in childhood. Although his work acquired posthumous renown, initially via British
psychiatrist Lorna Wing (1981), it was published in German only a year after
Kanner’s paper and has had a profound influence on understandings of the breadth of
the autism spectrum. In fact the term Asperger’s Syndrome, used to describe those on
the autism spectrum without delayed language or cognitive development, was
incorporated into the 4th edition of the DSM in 1994 (American Psychiatric
Association (APA) 1994) and then dropped nineteen years later in the DSM-5 in 2013
(APA 2013).
Asperger, too, observed the importance of motor stereotypies in the behaviour of
some of the children he wrote about. Fritz, for instance, was described as having a
range of ‘stereotypic movements and habits’ (Asperger 1991[1944]): 40) including
beating rhythmically on his thighs, banging loudly on the table, hitting both walls and
people and jumping around the room. Asperger hypothesized that sometimes these
stereotypies were ‘internally generated impulses’ while, at other times, they were a
response to ‘undesirable intrusions into his encapsulated personality’. He also noted
that ‘characteristic stereotypies’, such as hopping, fidgeting, whirling, spinning and
rocking, were common ‘to both the autistic and the brain-injured retarded child’
(Asperger 1991[1944]): 64). Clearly both Kanner and Asperger were struck by the
ways in which the children they described as autistic were engaged in motor
stereotypies. Further, they speculated as to the role of stereotypies in maintaining an
environment in which their patients appeared both disinterested in engagement with
others and immersed in their own self-created sensuous engagement.
The psychotherapeutic frame – dream screens and autosensual barriers
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Following Kanner’s (1943) initial description of ‘infantile autism’, clinical
understandings of autism, as a category distinct from childhood schizophrenia and
mental retardation, continued to evolve. Although Kanner had proposed innate
determinants of autism, Freudian theories were profoundly influential, especially
throughout the 1950s and 60s. The prevailing view, promulgated most successfully by
Bruno Bettelheim, was that autism was a response to poor parenting, with
‘refrigerator’ mothers found particularly culpable. He wrote one of the best known
and, in its day, widely acclaimed books on autism, The Empty Fortress (1967). This
remains a pivotal text, partly because it provides the reader with insight into the extent
of psychotherapeutic projections about autistic being but also because it offers richly
detailed case studies.
In The Empty Fortress, Bettelheim portrays the motor stereotypies of a number of
autistic children placed under his care. He notes that: ‘Nearly all autistic children tap
and twiddle with their fingers, but each does it in his own way’ (Betelheim 1967:
167). For Bettelheim, as for Kanner and Asperger, motor stereotypies are a form of
self-stimulation designed to blot out the external world. He explains:
Twiddling as a symptom (to which should probably be added rocking,
head rolling, and head banging) is highly overdetermined, has many roots
and serves many purposes. Among its uses, we have little doubt that it
creates a ‘dream screen’ on which the child projects his own private
reality. For example, while autistic children show an apparent
inattentiveness to sensory stimuli from the outside, some actually achieve
the inattention by the excessive, unvaried self-stimulation that arises from
their strange motor behavior. In this way outer stimuli are blotted out by
and ‘lost’ in the sensations the child stirs in himself. His own behavior
converts his state of ‘wakefulness’ into an overwhelming attentiveness to
himself, and effectively obliterates his perception of reality.
Although psychoanalytic interpretations of autism have waned in popularity, they
remain highly influential in some national contexts, including France, Argentina and
Italy, and persist as one strand of therapeutic provision in other countries, including
Britain. Frances Tustin, who was trained by psychiatrist and psychoanalyst John
Bowlby in Britain, notable for his pioneering work in attachment theory (e.g. Bowlby
1969), has been especially influential within this field. In her first book, Autism and
Childhood Psychosis (1972), she contended that autism is a pathological barrier
created by fixation at a pre-thinking stage of infant development. She believed it was
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an arrest serving as a protective shell against the terrifying awareness of bodily
separateness from the mother.
Writing in a 1997 memorial volume dedicated to Tustin, psychotherapist Anne
Alvarez offered some rather startling reflections on repetitive behaviours. After noting
her ‘profound boredom’ in the face of the repetitive behaviour of one of her patients,
Robbie, she advised that therapists should ‘allow ourselves the freedom to see the
deadliness in it, the emptiness, and possibly something even worse?’(Alvarez 1997:
233) With a somewhat Shakespearian bent, she described how 29-year-old Robbie,
whom she had been seeing for many years, would ‘would run back and forth shaking
his hands, as though to rid himself of something’ (Alvarez 1997: 248). For Alvarez
(1997: 234), this hand-flapping is part of ‘the real insanity of autism’.
Overall, psychoanalytic perspectives offer ambivalent, and sometimes intensely
negative, views on motor stereotypies in autism. The tendency towards a permissive
frame as integral to the therapeutic encounter sits in tension with a fundamentally
dismal take on autism as, depending on the time of writing, either a case of arrested
development or a protective shell erected against archaic fears. Alvarez may be
unusually straightforward when she writes about the ‘insanity’ of autism. Yet, to
borrow a leaf from her psychoanalytic style of argument, I feel compelled to say that
when I read these accounts I feel like I am going a bit bonkers. This has less to do
with the material in the case descriptions than with my own despair at the floridly
negative interpretations offered and the distinctly tepid accounts of patient progress
following hundreds of sessions over many years.
The behaviourist frame – quiet hands, quiet mouth, quiet feet
Psychogenic interpretations of autism, advocating treatment through the removal of
children from their parents and out-of-home placement in a therapeutic milieu,
remained popular throughout the 1950s and ‘60s. In the following decades, however,
those interpretations were successfully challenged by researchers and parent activists
who successfully refigured autism as a neurological disorder. Today, the consensus
view is that autism, far from being caused by inadequate and cold parenting, is
actually a neurodevelopmental disability with a strong genetic basis.
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Behaviourist approaches to autism now dominate treatment in much of the world,
especially the United States (* 2005: 79; Sigman, Spence & Wang 2006: 344) Of all
of the available therapies on offer, this approach, usually known as Applied
Behaviour Analysis (ABA), has the most robust evidence-base. ABA is primarily
associated with the pioneering work of Norwegian-American clinical psychologist,
Ivar Lovaas. In terms of motor stereotypies, ABA uses operant conditioning
techniques to try to decrease these behaviors with the aim of encouraging replacement
behaviours seen as more desirable and less stigmatising (Staples, Reid, Pushkarenko
& Crawford 2011: 401).
In the extensive ABA literature, motor stereotypies are referred to as ‘self-stimulating
behaviors’ (SSBs) or ‘stimming’. The term ‘self-stimulating’ is shorthand for the
theory that stereotypies are a form of operant behavior that is maintained
automatically by the reinforcing perceptual consequences it produces (Lovaas,
Newsom & Hickman 1987). It is not, according to this framework, shaped by social
consequences and so cannot be manipulated using socially mediated reinforcers such
as attention. ABA researchers and practitioners assert that stimming is related to a
variety of negative outcomes, including slowed skill acquisition and impaired social
interaction (Reed, Hirst & Hyman 2012: 423). Due to these negative outcomes, motor
stereotypies, including rocking, spinning and hand-flapping, need to be eliminated or
suppressed.
There are two major approaches to eliminating or reducing SSBs. The first relies on
systematic punishment procedures or ‘aversives’. The use of aversives, including
electric shock, was a commonplace technique in the 1960s (Lichstein & Schreibman
1976). Increasingly, however, punishment procedures in the ABA arsenal, which also
included slapping and physical restraint, attracted concerned criticism. Today ABA
therapy attempts to mould behaviour primarily through the use of positive
reinforcements or rewards. Treatments designed to address stereotypy include
differential reinforcement of incompatible behaviour. This might involve, for
example, providing reinforcers for hand-clasping which, while it is occurring, makes
hand-flapping impossible (Ringdahl 2011: 485).
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Reducing the occurrence of motor stereotypies is represented, within the ABA
literature, as especially important in general education settings. It is a technique of
integration. SSBs are described as both hindering a child’s ability to learn and as
disruptive to the teachers and other students (Conroy, Asmus, Sellers & Ladwig 2005:
223). Further, concerns are expressed that such behaviour may make a child stand out
and be stigmatised. The following set of cue cards, titled Quiet Hands, Quiet Mouth,
Quiet Feet, provide an illustration of these methods. Such ‘visuals’ are widely used in
the classroom behaviour management of students on the spectrum and are freely
available for download on the internet.
Figure 1. Quiet Hands, Quiet Mouth, Quiet Feet (Pinterest n.d.a.).
In many respects, psychoanalytic and behavioural views of autism are fundamentally
opposed. Indeed, behaviourism in general can be conceived as a reaction against the
then dominance of psychoanalytic approaches (Skinner 1954). Nevertheless, these
two frames share negative views of motor stereotypies as behaviours that block out
the world and disturb others. These negative views shape therapeutic action. While
psychoanalysts hoped to suppress stereotypies as an eventual result of bringing
children to life through the healing therapeutic encounter, behaviourists adopted a less
resurrectionist and more overtly pragmatic attitude, searching for technologies to
manipulate stereotypic expression to achieve quiet hands, quiet mouths and quiet feet.
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The sensory frame: Occupational Therapy and sensory modulation
Both psychoanalytic and behaviourist frames of understanding, and acting upon,
motor stereotypies acknowledge the importance of taking into account sensory
experiences. Within a psychoanalytic frame, motor stereotypies have been interpreted
as an autistic technique for erecting an autosensual barrier against the world. In the
ABA literature, ‘stimming’ is regarded as automatically reinforced self-stimulatory
behaviour. However, the therapeutic framework that is most concerned with the
domain of the sensory is Occupational Therapy or OT.
In the DSM-5, a recognition of the importance of sensory differences was, for the first
time, incorporated into the diagnostic criteria for ASD in 2013 under the heading of
RRBs (Watling & Hauer 2015: 1). The relevant criterion reads: ‘Hyper-or
hyporeactivity to sensory input or unusual interest in sensory aspects of the
environment (e.g. apparent indifference to pain/temperature, adverse response to
specific sounds or textures, excessive smelling or touching of objects, visual
fascination with lights or movement)’ (APA 2013). Overall, an interest in the sensory
features of autism is currently receiving increased attention and there is widespread
acceptance of the idea that these features significantly impact the daily lives of
individuals (Lane, Young, Baker & Angley 2010).
Parents often cite OT as a preferred intervention (Watling & Hauer 2015: 8) and it is
usually offered, along with speech therapy, as a standard component of early
intervention packages. OTs subscribe to the view that both under (hypo) and
overresponsiveness (hyper) to sensory inputs coexist in individuals on the spectrum.
Motor stereotypies, including hand-flapping, are sometimes postulated to be forms of
‘sensation seeking’ or craving sensory input (Bhat, Landa & Galloway 2011: 1120).
At other times, they are described as a mechanism of self-calming as a result of
overarousal (Joosten & Bundy 2010: 366). Evidence of abnormal sensory processing
can, within this framework, reflect either increased or decreased sensory thresholds,
with engagement in motor stereotypies hypothesised as helping to regulate either of
these states (Joosten & Bundy 2010: 370). Sensory seeking, sensory avoidance, low
sensory registration and high sensory registration are all incorporated within the
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model of a body that is biologically designed to seek homeostasis. ‘Hyper’, ‘hypo’,
‘paradoxical’ and ‘fluctuating’ are the shifting terms that ensure that a raft of
observable behaviours can be explained within this referentially closed circle.
Despite the argument that motor stereotypies function to regulate under or
overarousal, they are still thought of as requiring management. Sensory-based
interventions (SBIs) are designed to assist children to adapt to a range of sensations or
environments, and involve a grab-bag of interventions including placing weighted
vests on children, brushing their skin and seating them on large balls. These are
sometimes combined to produce what is known as a ‘sensory diet’, designed to help
the child to modulate their arousal levels throughout the day.
Figure 2. Two images from U.S. websites selling autism resources. The first shows
weighted compression vests, said to ‘provide unconscious information from muscles
resulting in a relaxing calming effect on children with autism’ (Autism Speaks 2017)
and the second a ‘sensory brush’ which is run over the child’s skin using very firm
pressure for a few minutes in order to decrease their sensitivity to touch and ‘prepare
students with special needs for learning’ (National Autism Resources).
Although sensory interventions delivered by OTs in clinic settings and also by staff in
segregated schools for students with autism and/or ID are widespread, there is a large
body of research questioning the effectiveness of such procedures (e.g. Lang et al.
2012; Sniezyk & Zane 2015). Put succinctly, the provision of sensory-based therapies
to treat autism is big business with a slender evidence-base. The controversy around
sensory therapies has, however, little impact on the popularity of this therapeutic
modality in clinics and schools. Even when researchers question the link between
motor stereotypies and underlying difficulties with sensory processing, they do not
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question the status of stereotypies as behaviours that need to be managed. In this
sense, we can see that although the language and methods of therapeutic goals differ,
psychoanalytic, behaviourist and sensory frameworks all agree in conceiving of motor
stereotypies as a ‘problem’ requiring, variously, analysis, suppression, management or
modulation.
The neurobiological frame: emic perspectives and ethical queries
From a neurological perspective, motor stereotypies are part of a spectrum of
neurodevelopmental movement disorders (Barry et al. 2011: 984-5). Neurologists
who specialise in this area take an interest in the manifestation of motor stereotypies
across a range of conditions, such as Tourette syndrome, which, like ASD, straddles
the neurology-psychiatry boundary (Rinehart 2009). Stereotypic Movement Disorder
(SMD) is classified in the DSM-5 as a motor disorder in the category of
neurodevelopmental disorders. SMD may be diagnosed in conjunction with other
disorders if the stereotypy is a focus for intervention (Freeman 2015: 125). When it is
non-self-injurious, neurologists may question the need for therapeutic intervention. As
Freeman, Soltanifar and Baer (2016: 737) succinctly express it: ‘An important
question is whether these patterns are pathological, i.e. a “disorder,” or are a
developmental variant’.
Neurologists acknowledge the possibility that motor stereotypies alter or maintain
states of arousal. But they stress the involuntary nature of the movements (individuals
do not, as far as we know, intentionally flap their hands), which lends support to the
theory of a neurobiological basis for motor stereotypies. However, to date, no precise
neuroanatomical localisation for motor stereotypies has been found (Singer 2009: 78).
Further, the presence of stereotypies in typically developing children suggests a
subtle, rather than a gross, neuropathology (Barry et al. 2011: 980).
Neurologists take a particular interest in the phenomenology of motor stereotypies.
Freeman has emphasised the experiential gulf between motor stereotypies common in
SMD, including hand and arm flapping, pacing, running, bouncing and complex
finger or hand movements, and tics. Children diagnosed with SMD commonly report
that the triggers for the onset of their movements are pleasurable, often involving
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excitement or active daydreaming (Freeman, Soltanifar & Baer 2016: 735). Tics, by
contrast, are disliked and associated with stress (Freeman, Soltanifar & Baer 2016:
735). Robinson and colleagues (2014) have extended understanding of the pleasurable
aspects of motor stereotypies. They describe a small subgroup of children who present
with stereotyped movements in the context of episodes of intense imagery suggesting
that, for some people, motor stereotypies are triggered by underlying cognitive
processes, linked to the imaginative production of images and ideas, experienced as
highly enjoyable.
Evidence-based therapy for the suppression of motor stereotypies is, as the earlier
brief reviews of psychoanalytic, behavioural and sensory approaches outlined,
generally weak. Methods reported as effective sometimes raise deep ethical concerns.
Mechanical restraints, for example, have been successfully used to suppress hand-
related stereotypies in people with severe to profound ID (see Barry et al. 2011: 983).
But many of us would, I suggest, find this unacceptable. Hand-flapping, one suspects,
is rarely a cause of serious self-injury.
While the management practices for Tourette syndrome adopt a neurological
disability perspective, educating parents and teachers that these are not voluntary
mannerisms, those for autism remain curiously mired in a view that motor
stereotypies are deliberate and therefore open to manipulation and that it is for the
good of the child to minimise or suppress them. This perspective runs counter to the
current understandings of neurologists. In most instances, they argue that no treatment
is necessary nor is there a sufficient evidence base to support it (Freeman 2015: 131).
The psychiatric sequelae to neurological suppression, Rinehart (2008: 3) cautions,
may be emotional meltdowns. In fact, if these movements are developmentally useful
for some individuals, as suggested by the link between stereotypies and imaginative
episodes, then treatment may even be contraindicated (Freeman, Soltanifar & Baer
2016: 737).
Unlike the therapeutic frames I previously reviewed, which tend to vigorously
promote their own understandings of ASD and their particular brand of therapeutic
approaches, neurology often proceeds through a process of questioning, fuelled, I
suggest, by an innately comparative perspective. At the risk of stating the obvious, the
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ways in which neurologists question classifications and evince a sceptical or at least
neutral attitude towards therapeutic interventions is because their core business is not
peddling therapies, even if they may sometimes recommend them. On the other hand,
those who do peddle autism therapies frequently use ersatz versions of neurology to
impress their customers (see Lilley 2011), often hitched to the neuroplasticity
bandwagon. Neurologists, I might add, cannot be held responsible for these frequently
dubious appropriations.
Figure 3. Shutterstock image used to advertise ‘neurofeedback training’ to reduce
symptoms associated with ASD and to ‘improve cortical function’ (About
Neurofeedback 2014).
The neurodiversity frame: I stim therefore I am
Public conversations around autism have substantially changed over the last two
decades. 1998 saw the introduction of the term ‘neurodiversity’ into academic writing
as well as journalism on autism.1 The neurodiversity movement frames autism as a
natural human variation rather than a disorder. It rejects the search for a ‘cure’ for
autism, arguing that this aim is eugenicist. Neurodiversity advocates also question
many of the therapeutic approaches currently operating within the autism matrix.
They have been especially critical of ABA (see Dawson 2004) as illegitimately
repressing their natural modes of expression. Autism is seen, from a neurodiverse
perspective, as an integral part of self-identity and celebrated as an authentic form of
human diversity. Advocates diagnosed with ASD often self-describe as ‘Autie’, and
sometimes ‘Aspie’, in order to highlight their autism pride (Ortega 2009: 433). Much
1 Australian Judy Singer (1998) introduced the term into academic discourse. In the same year, Harvey
Blume (1998) wrote an article in The Atlantic titled ‘Neurodiversity’ (see Moore 2014: 223-5).
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of this perspective is self-published on the Internet, appearing in numerous blogs and
Youtube videos. As Ortega (2009) has argued, neurodiversity advocates make use of
the internet to construct new forms of ‘biosociality’ (Rabinow 1992).
The first video I watched in this genre was a seminal contribution by autistic
neurodiversity advocate Amanda Baggs titled ‘In my language’ (2007). In this video
she represents her motor stereotypies, including rocking and hand flapping, humming
and pacing, as forms of intense interaction with her environment. Melanie Yergeau’s
2012 Youtube video titled ‘I stim therefore I am’ contributes to this reframing of
motor stereotypies as an inherent element of autistic personhood. Yergeau’s video
offers a powerful statement on the damage done by suppressive therapies. ‘I listened
to my teachers; I sat on my hands’, she states, lamenting the self-loathing that this
inculcated. Adamantly refusing the stigmatisation of motor stereotypies, she insists
‘Stiff and stimmy is grace’. Reviewing a family video, she approvingly reinterprets
her unselfconscious stimming as a child. ‘I am fascinated by my 5 year old body’, she
asserts. ‘It is loud and it doesn’t give a fuck’.
These autobiographical musings are firmly located within the framework of identity
politics. Autism is at times represented as a ‘culture’ with those diagnosed described
as sharing a common ‘language’ of motor stereotypies and other behaviours and
orientations. The content of that commonality is not especially important. The point is
that neurodiversity activists are declaring that they have a way of life, which deserves
protection and respect. The model for their activism is provided by a range of
movements – gay pride and deaf culture (Ortega 2009: 432) come immediately to
mind.
Commentators on the identitarian features of neurodiversity politics (Orsini 2012:
807) often point out that those encompassed by the diagnostic label of ASD are
extremely heterogeneous and that only a small percentage subscribe to, or even know
about, these radical views. It seems to me that this observation, while true, misses the
point. These interventions are helping to change the public conversation around
autism and are a valuable contribution to any discussion about the ethics of therapy.
Within the discourse of neurodiversity, hand-flapping has become a synecdoche for a
valued autistic difference. The potency of neurodiversity is not in its originality but in
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its persistent challenges to the ethics of the therapeutic marketplace and the
continuing hold of ableist ideologies in pivotal social institutions, including, as we
have seen, both the clinic and the school.
Ortega (2009) has argued that the emergence of an autistic culture movement is linked
to the penetration of neuroscientific ways of knowing in our everyday lives. In his
assessment, neurodiversity is part of a broader process of ‘neurological or cerebral
subjectivation’. In the process an essentialised ‘neurodiverse brain’ is often contrasted
with an equally essentialised ‘neurotypical’ brain. Much of this is ‘folk neurology’,
employing elements of populist neurological discourse in order to advance the case
that therapeutic modalities – whether psychoanalytic, behaviourist or sensory – cannot
simply be assumed to be doing good. Emphasising autism as a form of natural
variation in human wiring is one way of counteracting stigma, and of reclaiming a
disorder as a difference (Moore 2014: 228).
Conclusion: they call me a bird and things
In this talk I have concentrated on motor stereotypies, and on hand-flapping in
particular, because this focus allows us to see something of the history of autism as a
diagnostic, therapeutic and lived category. We have seen how very different
frameworks for understanding hand-flapping have generated diverse therapeutic
modalities. And we have also considered autobiographic accounts that tell us how
some of those therapeutic modalities are experienced by people on the spectrum.
What is at stake here? Prominent autistic self-advocate Ari Ne’eman summed up the
issue. Invited to comment on revisions to the criteria for autism diagnosis in the
DSM-5, he put the following proposition to the working group of psychiatrists:
My concern is that there are certainly autistic traits like encompassing
preoccupations, which in some contexts are disabling, and in some
contexts may be strengths, as well as traits like hand-flapping or other
forms of stimming which serve a definite purpose. And if you’re defining
a trait – severe as having a lot of these traits and less severe as having less
of these traits – how do you intend to avoid the risk that clinicians will
take that as guidance to eliminate non-harmful autistic traits that may
serve an important purpose for the individual? (cited in Moore 2013: 196-
7)
16
Here Ne’eman opens up a dialogue on the ways in which medicalised understandings
of autism are encoded in diagnostic criteria and the ethical implications of that for the
provision of therapies that may do more harm than good. Each different framework of
understanding reviewed here has consequences, both for the commoditised provision
of therapeutic interventions and for our willingness, as a society, to accept forms of
bodily and cognitive difference.
Motor stereotypies, when they occur in public, are often stigmatising. The extent to
which people find behaviours like hand-flapping unacceptable or, at least, challenging
was revealed to me a number of times during fieldwork, conducted with mothers of
children diagnosed with autism in Sydney from 2009-2011. These women sometimes
worried that the hand-flapping and other motor stereotypies of their children made
them targets of bullying.
The tensions between a politics of maternal care, often hopefully focused on finding
treatments and therapies to normalise children, and the politics of neurodiversity
activists, who emphasise autism acceptance and even pride and, in so doing, may
reject therapies, are many. Ari Ne’eman, for instance, draws a sharp distinction
between the autistic community, consisting of individuals on the spectrum, and the
autism community, comprised of parents, professionals, and educators (Moore 2014:
221). But there is a danger of overplaying this schism. Neither parents nor
neurodiversity activists are monolithic groups. There are many differences of opinion
and orientation within these camps (Orsini 2012: 822-3).
One mother, Hope, provides an example of an orientation sympathetic to autistic
acceptance and pride. During an interview in 2010, she related an instance of
stigmatisation prompted by hand-flapping during her son’s first year of schooling and
her consequent efforts to make his stereotypies a source of pride rather than shame.
She recounted this in the form of a conversation between herself and her son:
It was going really well. Then I said to him, ‘So what do you do during
lunch and recess?’ ‘I just go to the library Mum.’ I said ‘Why?’ He goes,
‘Oh, because people pick on me.’ ‘Why do people pick on you
sweetheart?’ ‘Because I flap.’ He said, ‘I really tried to stop flapping but I
can’t. Sometimes I just can’t stop and they call me a bird and things.’
17
‘Sweetheart it is very special, you are very special because you can flap
and no-one else can flap like you, Mark’.
From this mother’s vantage point, respect for Mark’s differences is a fundamental
starting point.
Both Mark’s experience of stigmatisation and his mother’s counter-story are telling. A
consideration of the therapeutic frames that have been targeted at the reduction or
erasure of motor stereotypies and of the objections to such therapeutic targets on the
part of neurodiversity activists reveals how hand-flapping has become a highly
charged topic of disputes over definitions of ability and disability, impairment,
normalisation and the right to difference. This contestation also exists in the everyday
spaces of autism, as children and families try to make sense of the disabling attitudes
that shape their lives. Within these contested zones, I have argued, neurological
understandings and populist discourses around neurology have been influential in
opening up a space through which the ethics of autism therapies can be publicly
debated, and a counter-discourse of autism as a phenomenologically distinct lived
experience can be taken seriously.
Acknowledgments
Thanks to Professor Roger Freeman for useful correspondence and reading
suggestions on motor stereotypies.
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