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Attention, monotropism and the diagnostic criteria for autism

Authors:

Abstract

The authors conclude from a range of literature relevant to the autistic condition that atypical strategies for the allocation of attention are central to the condition. This assertion is examined in the context of recent research, the diagnostic criteria for autism in DSM-IV and ICD-10, and the personal experiences of individuals with autism including one of the authors of the article. The first two diagnostic criteria are shown to follow from the 'restricted range of interests' referred to in the third criterion. Implications for practice are indicated.
139
Attention, monotropism and
the diagnostic criteria for
autism
DINAH MURRAY Autism & Computing,
www.autismandcomputing.org.uk
MIKE LESSER Autism & Computing,
www.autismandcomputing.org.uk
WENDY LAWSON Autism & Computing,
www.autismandcomputing.org.uk
ABSTRACT The authors conclude from a range of literature relevant
to the autistic condition that atypical strategies for the allocation of
attention are central to the condition. This assertion is examined in the
context of recent research, the diagnostic criteria for autism in DSM-
IV and ICD-10, and the personal experiences of individuals with autism
including one of the authors of the article. The first two diagnostic
criteria are shown to follow from the ‘restricted range of interests’
referred to in the third criterion. Implications for practice are indicated.
ADDRESS Correspondence should be addressed to: DINAH MURRAY, Autism &
Computing, 42 Cheverton Road, London N19 3AZ, UK. e-mail: dinahmurray@beeb.net
Introduction
The diagnostic criteria for autism make a perplexing set. However, atypical
strategies for the distribution of attention seem to underlie both sets of
diagnostic criteria currently in use, i.e. those in the Diagnostic and Statistical
Manual of Mental Disorders (DSM-IV: American Psychiatric Association, 1994)
and the International Statistical Classification of Diseases (ICD-10: World Health
Organization,1992). We argue that attention also underlies the patterns of
subjective experience reported by individuals on the autism spectrum (for
example, Blackburn, 2000; Grandin, 1995; Lawson, 1998; Williams,
1994). There is strong evidence that atypical patterns of attention are a
feature of autism (see Goldstein et al., 2001 for an overview). We suggest
that the ‘restricted range of interests’ referred to in the third part of both
sets of diagnostic criteria, which we call monotropism (Murray, 1992), is
central to the autistic condition.
autism © 2005
SAGE Publications
and The National
Autistic Society
Vol 9(2) 139–156; 051398
1362-3613(200505)9:2
www.sagepublications.com
DOI: 10.1177/1362361305051398
KEYWORDS
affect;
attention
strategies;
interest;
monotropism;
motivation
03 Murray (to-d) 31/3/05 1:23 pm Page 139
Approach
We are not attempting to establish new facts about autism but trying to
interpret what is already known. Our method is to integrate the known data
using a conceptual model that is capable of informing practice.
Hypothesis
At any one moment the amount of attention available to a conscious indi-
vidual is limited. The limited availability of attention plays a fundamental role
in everyday life.The assumption that attention is quantitatively limited is sup-
ported by the finite supply of metabolites available to the brain. It is implicit
throughout experimental psychology in the concept of task demand. The
authors suggest competition between mental processes for scarce attention
is an important factor in the shaping of the cognitive process.
It is generally accepted that focus is a quality of attention. However, this
optical metaphor may be extended to parameterize focus of attention
between diffused light at one extreme and a torch beam at the other. That
is to say, attention may be broadly distributed over many interests or may
be concentrated in a few interests. The authors propose that the strategies
employed for the allocation of attention are normally distributed and to a
large degree genetically determined.
We propose that diagnosis of autism selects those few individuals at the
deep or tight-focus extreme of this distribution of strategies. Furthermore
the authors propose that social interactions, the use of language, and the
shifting of the object of attention are all tasks that require broadly distrib-
uted attention. Consequently these activities are inhibited by the canaliza-
tion of available attention into a few highly aroused interests.
Our hypothesis is that the difference between autistic and non-autistic
is a difference in the strategies employed in the distribution of scarce atten-
tion. That is to say, it is the difference between having few interests highly
aroused, the monotropic tendency, and having many interests less highly
aroused, the polytropic tendency. An aroused interest is an interest charged
with feeling. We use the word ‘interest’ in a way that broadly coincides with
common parlance.
Monotropism and other attempts to explain autism
Three ‘cognitive explanations’ of autism have been thoroughly researched
in recent years. Here is how Russell sums them up:
the core cognitive deficit in autism is lack of (or delayed or deviant develop-
ment of) an innately specified ‘module’ for conceptualizing mental states – the
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so-called Theory of Mind mechanism . . . [or it is] impairment in integrating
elements into wholes (Weak Central Coherence theory) [or] impaired execu-
tive functioning (executive dysfunction theory)’. (2002, p. 295)
Of these, ‘weak central coherence’ is the position closest to ours. This
approach led to a variety of studies supporting the view that being poor at
integrating material may mean having strengths in other areas (see Garner
and Hamilton, 2001; Happé, 1999; Mottron and Burack, 2001; Plaisted
et al., 1998a; 1998b; Shah and Frith, 1993). These positive results have
tended to shift the description of the theoretical stance to the less negative
‘detail focused’ (Happé, 1999), emphasizing ‘local’ versus ‘global’ process-
ing. Research results that favour ‘central coherence’ types of explanations in
which the drawing together of information is treated as a core problem are
generally equally well explained by monotropism in an interest model of
mind. However, a number of studies such as those of Mottron et al. (1999)
and Plaisted et al. (1999) have found that local processing does not necess-
arily take precedence over global. There may be no problems in integrat-
ing information when it is attended to.
Attention is the resource which is competed for by task demand, and a task is an enacted
interest. In order to perform a task (as a task) any individual needs to
see the point of the task – understand the goal
value the point of the task – be motivated by it
see how to perform that task – understand precisely what task it is, what
steps must be taken to carry it out
know how to take the identified steps.
Monotropic individuals are likely to have problems with each of these. It is
important to make sure that any testing of individuals with autism
spectrum disorders meets these requirements, or it may not measure what
it purports to measure (for a relevant discussion see Bara et al., 2001). So
long as the above criteria are fulfilled, it follows from the limited attention
hypothesis that monotropic focus will mean both tending to perform the task well
and tending to lose awareness of information relevant to all other tasks.
Temple Grandin, who has a diagnosis of autism, tells us that as a child
she would be ‘Intensely preoccupied with the movement of the spinning
coin or lid, I saw nothing or heard nothing. People around me were trans-
parent. And no sound intruded on my fixation. It was as if I were deaf
(Grandin and Scariano, 1986, p. 20). Several of Kanner’s (1943) seminal
case studies have similar descriptions from an observer’s viewpoint, and fre-
quently mention the satisfaction or even ecstatic joy which accompanies
the achievement of self-generated tasks. For example, one child is described
as ‘always vivaciously occupied with something and seemed to be highly
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satisfied unless someone made a persistent attempt to interfere with his self-
chosen actions’ (1943, p. 227). The intensity of emotion felt by many of
these children is a conspicuous feature of Kanner’s account: their problem
is with affective contact, not with affect per se. This intense engagement is
reflected in another recurrent feature of Kanner’s cases: several are reported
as finding failure unbearable. As Wing puts it, ‘many children with autism
are extremely distressed at any experience of failure and hate to be cor-
rected if they make an error’ (1996, p. 131). These children tend to be
highly task focused, though their tasks may differ from ours.
Plaisted argues that, ‘Narrower concepts and sharper category bound-
aries . . . would reduce the likelihood of activation by associative excitation
of concepts that could be brought to bear on making sense of the current
array of stimuli’ (2001, p. 166). We consider those crucial features of
monotropism, but would emphasize that these narrower concepts are
highly charged with affect: individuals on the autism spectrum tend to be
either passionately interested or not interested at all. According to our
model a corollary of this tight focus is a lack of any generalized structured
anticipation: these are people who live in a world in which sudden experi-
ences repeatedly occur. As Ros Blackburn, who speaks about autism from
an insider’s perspective, often describes it, these may have the shocking
force of a balloon bursting behind one’s head. Equally, the few interests
that are established will be formed by information that creates strong and
definite expectations – which if confounded will tend to cause acute
distress. Those strong and definite expectations, which have been gained
with such effort, are likely to be exceptionally hard to override. What is
sometimes referred to as ‘top-down processing’ (Engel et al., 2001), i.e.
bringing prior information to bear on the interpretation of current experi-
ence, will be steeply restricted in monotropism, being confined to infor-
mation gained in relation to the (criterially) narrow range of interests. It is
not that ‘top-down processing’ is dispreferred, but that it will tend to be
idiosyncratic and resistant to correction. For example, in Russell (2002)
individuals with autism spectrum disorders are asked to suspend their hard-
won ‘reach-to-grasp’ knowledge (Mari et al., 2003) in favour of an indirect
procedure, and find this very difficult.
So, from our perspective there is no reason to expect a preference for
‘local’ rather than ‘global’, or for detail over a whole; rather there tends to
be hyper-awareness within the attention tunnel, and a general lack of
expectation, i.e. hypo-awareness, outside it. The pattern of unusual sensory
responses in individuals on the autism spectrum – which Bogdashina
(2003), following Asperger (1944, as translated by Frith, 1991), sums up
as tending to be either hyper- or hypo-sensitive – reflects this. The general
lack of preparedness crucially includes the shared expectations which
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underpin typical awareness. Concepts about what might count for other
people as a Gestalt may be absent. As a result of this, those ‘sharp category
boundaries’ which Plaisted identifies may be highly idiosyncratic, and may
not coincide with boundaries imposed by a shared language. That in turn
may have the consequence that the quasi-automatic inferencing which the
structured interrelated semantic categories of language make possible will
not occur. As Jordan observed, the individual with autism tends to be ‘a
phenomenologist, trying to learn from what is seen, heard, felt, smelt,
rather than from what can be implied or inferred from these sensations’
(1990, p. 165). Donna Williams, who writes about autism from an insider’s
perspective, has examined these issues and postulates that implications and
inferences and narratives use a language system that distances most people
from the world they experience on a sensory level:‘The sensing person may
not bother with the meaning, purpose, or function of people, creatures,
places or things’ (1998, p. 105). Those are part of an enculturation process
which entrains people in similar behaviours, which people on the autism
spectrum tend to miss. As Jordan et al. put it,‘Individuals with autism may
be more different from one another than others because of their lack of
socialisation into a common culture’ (1999, p. 29).
Bryson et al. (1997), in their overview of the executive function
approach, make a point of emphasizing the great variability of results in
research involving individuals on the autism spectrum, both within and
across study results. This variability contributes to the problems of develop-
ing a clear picture of autism spectrum differences, and may sometimes
perplex researchers. We see the great variability as a result of the combi-
nation of individuals on the autism spectrum naturally having few, narrow
interests, and during the developing years those interests not including an
interest in being part of the social world. We suggest that the uneven skills
profile in autism depends on which interests have been fired into
monotropic superdrive and which have been left unstimulated by any felt
experience. We expect to see this unevenness in every area and would be
surprised to find uniform traits across populations with autism spectrum
differences, except those that are inherent in monotropism. That is to say,
we would expect strong stable preferences for a narrow range of predictable attractors, and
learning and thinking strategies which do not depend on simultaneous arousal of a number of
distinct interests, such as comparisons, metaphors, contextualization and social motivation.We
would also predict difficulties with shifting cognitive set except where the target is
a strong attractor for that individual: that is to say, where it appeals to one
of that person’s few prior interests. Monotropic individuals will benefit
from being given more time to accommodate their set-shifting problems.
Problems with shifting cognitive set are one of the most robust findings
in autism research: as Bryson et al. put it, ‘the ability to rapidly and
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accurately orient and shift attention would appear to require undue effort’
(1997, p. 254; see also Courchesne et al., 1994; Hughes and Russell, 1993;
Lovaas et al., 1971; Ozonoff et al., 1994). It is an ‘executive function deficit’,
which research has repeatedly reaffirmed. We see this as a corollary of
extreme task focus; indeed Bryson et al. (1997) also cite results showing ‘if
anything superior maintenance of set’ in research subjects on the autism
spectrum. We also see set-shifting problems as related to the points Plaisted
(2001) makes about ‘reduction in associative excitation’ reducing ‘genera-
tivity’. The general problem of ‘getting stuck’, of being unable to move on
without prompts, is a result of this. It seems it is only when a current
interest is in play that individuals on the autism spectrum know what to
do, hence the difficulties with leisure time which are so often reported in
autism.
Brock et al. (2002) note, as we do, the range of autistic processing
differences that can be attributed to lack of simultaneous cognitive activity.
They propose that ‘breakdown in integration is caused by deficits in
temporal binding between local [neural] networks’ (2002, p. 220). Our
own proposal is about cognition: we do not know its relevance to neuronal
activity. We believe that a shortage of attention is key to the lack of simul-
taneous activity, rather than a lack of synchronization per se. From the
perspective of monotropic cognition there seems no need to posit an
additional ‘temporal binding’ mechanism. Brock et al. also propose that in
‘low-functioning individuals the deficit will be pervasive, affecting inte-
gration even between proximal brain regions’ (2002, p. 212); we suspect
the consequences of monotropism will vary similarly.
The monotropism model posits that the co-activation of distinct inter-
ests is unlikely though not impossible: different overall quantities of atten-
tion may occur at different times in any individual. If the understanding
and the motivation are present, even the least evidently able people with
autism may be able to do some things strikingly well, although what they
do may be outside the bounds of social acceptability. When higher levels
of attention are available, for instance at times of high motivation, if greater
numbers of interests are in play connections may be made or strengthened.
Therefore we do not think it is appropriate when discussing the potential
of individuals on the autism spectrum to suggest that they have ‘an inabil-
ity to’ do this or that. We suggest that is more accurate to speak of indi-
viduals having difficulties with this or that, rather than incapacities. We
think the root of the social problems sometimes regarded as core in autism
is probably attentional, and we are certain that those problems are worsened
by the profundity of monotropism.
For an in-depth overview of psychological theories of autism, which
highlights the complexity of issues around awareness of self and other in
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autism, see Jordan (1999); and see also Hobson (1990) and Lee and
Hobson (1998). Problems with understanding the social process and
identifying other people as creatures with their own independent thoughts
and hopes were encapsulated for a while in the idea that ‘a module devoted
to theory of mind’ was missing in autism, leaving the rest of cognition
intact (Baron-Cohen et al., 1985). However, several studies (for example,
Bowler, 1992; Dahlgren and Trillingsgaard, 1996; Roeyers et al., 2001)
support the view that when theory of mind tasks are fully understood by
participants with autism there are no problems in carrying them out, but
in real-life situations the task demands tend to be too great (Bara et al.,
2001). A great many separate tasks are rapidly integrated in reacting adap-
tively to other people:‘In real-life situations, many crucial social cues occur
very rapidly. Failure to notice them may lead to a general failure in assess-
ing the meaning of entire situations, thus precluding adaptive reactions to
them’ (Klin et al., 2003, p. 345). It has also become apparent that ‘theory
of mind’ skills tend to be correlated with general understanding of life in
a shared world, as Dahlgren and Trillingsgaard conclude: ‘the probability
that children with autism and Asperger’s syndrome will solve theory of
mind tasks increases with the level of intelligence, verbal intelligence and
chronological age’ (1996, p. 762).
Monotropism and the diagnostic criteria for autism
We believe that our use of the concept of an interest both conforms closely
to colloquial use and corresponds with the use of interest that appears in
the diagnostic criteria of DSM-IV and ICD-10. (The numbering of criteria
here matches that in the original rather than the order in which they appear
in this article.) First:
Criterion 3 Restricted repetitive and stereotyped patterns of behaviour, inter-
ests and activities, as manifested by . . . the following:
I. encompassing preoccupation with one or more stereotyped and restricted
patterns of interest [to here DSM-IV = ICD-10] that is abnormal either in
intensity or in focus [DSM-IV only].
We suggest that the restricted, repetitive and stereotyped patterns of behav-
iour and activities and the restricted interests mentioned in this criterion
follow from the monotropic tendency. DSM-IV affirms Kanner’s (1943)
view that the interests of people on the autism spectrum tend to be dis-
tinctively intense or focused. For example:
It’s as if I am tuned in to watching out for the birds. If a bird flies past, over
or in front of me, it ‘catches’ my attention immediately. It doesn’t matter what
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else is going on, within or without me, my interest is the birds. I can watch
them for hours, and during this time I am in a state of intense joy. Sometimes
this intensity makes me cry.
1
Polytropism implies the existence of many co-aroused interests constantly
establishing and reinforcing connections between each other. Monotropism
results in large areas of potential information not being registered.
I have many of the pieces of information stored within my memory and I can
list them, but I cannot locate the connections that enable me to piece them
together in a tangible way and lead me into action.
In individuals on the autism spectrum, interests will tend to be uncon-
nected or idiosyncratically connected. As Allen and Lesser (1993) argue in
their article about error making and discovery in evolution, idiosyncratic
qualities are valuable to the species, if not the individual. While multiple
connections between interests require time to develop in autism, connec-
tions within interests, for example calculations, may appear instantaneous
(Hermelin, 2001).
I can name the many birds with their variety of calls and bird song around
me during a countryside walk. However, I find it difficult to answer a single
question about what I might like for lunch.
A monotropic interest is much more closed than a typical interest. Typical
interests flow into each other through so many connections that their only
stable distinctions may be culturally acquired. By contrast, monotropic
interests are deep basins of attraction where attention gets caught, and may
be expressed in a thought or action over and over again. No alternative
attractor may be apparent.
Criterion 3 (cont.)
II. apparently inflexible adherence to specific, nonfunctional routines or
rituals
III. stereotyped and repetitive motor mannerisms (e.g. hand or finger
flapping or twisting or complex whole-body movements)
IV. persistent precoccupation with parts of objects.
To illustrate:
Although so many of us have phenomenal memories for facts and figures,
these are secondary to our need for order. When it comes to matters of our
well-being, we are utterly focused upon the need for order, familiarity and
reassurance. For example, I cannot ‘move on’ unless certain ritualistic expec-
tations are met (meals, words, events). At times, even though specific things
have been told to me, I lose the feeling of their reality and am desperate to
know them again. I may ask the same question to gain reassurance or I may
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not know how to do this. I may simply sit in a dark room for hours rocking
and feeling terrified.
Repeated failure to meet their own and other people’s expectations
(Lawson, 1998) may lead to dread, a dominant emotion for many people
with autism (Grandin, 1995; Lawson, 2001).
To a person in an attention tunnel every unanticipated change is abrupt
and is truly, if briefly, catastrophic: a complete disconnection from a
previous safe state, a plunge into a meaningless blizzard of sensations, a
frightening experience which may occur many times in a single day.
Following such an episode it may take a long time for any other interest to
emerge. The first basin of attraction to draw the interest is likely to be a
familiar action which may replace any inclination to repeat the failed
attempt (Cesaroni and Garber, 1991; Lawson, 2001).
I realized that she was upset with me but I didn’t know why. I immediately
began to rub my fingers together rhythmically and walked about in small
circles in an attempt to make the bad feelings go away.
These familiar and reassuring actions include a variety of those behaviours
sometimes referred to as ‘stimming’, e.g. humming, rocking, handflapping.
We are now in a position to consider the bearing of monotropism on
the other diagnostic criteria.
Criterion 1 Qualitative impairment in social interaction, as manifested by at
least two of the following:
I. marked impairments in the use of multiple non-verbal behaviours such
as eye-to-eye gaze, facial expression, body posture, and gestures to
regulate social interaction
II. failure to develop peer relationships appropriate to developmental level
III. a lack of spontaneous seeking to share enjoyment, interests, or achieve-
ments with other people (e.g. by a lack of showing, bringing, or pointing
out objects of interest to other people)
IV. lack of social or emotional reciprocity [note: the description gives the
following as examples: not actively participating in simple social play or
games, preferring solitary activities, or involving others in activities only
as tools or ‘mechanical’ aids].
All of these ‘qualitative impairments in social interaction’ concern the
absence of the usual acquired behaviour of aligning or coordinating one’s
emotions and actions with those of other people (Jordan, 1999). In social
discourse people take turns in determining, moment by moment, the
current common interest (Murray, 1986). Monotropic individuals may
never learn how to participate, for a number of reasons. The basic reason
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is the patchy and partial awareness that results from monotropic focus. It
appears that it may take children on the autism spectrum many years longer
than it does typical children to recognize the separate existence of other
people (Attwood, 1992; Hobson, 1990; Lawson, 1998).
Although I certainly understand the concept of ‘friend’ now, as a child I didn’t
understand this. Even the concept that other people were separate to me, was
not considered. If I thought a thought I believed others would know what I
was thinking. Therefore, they must have known what I needed. Failure to meet
my needs resulted in my feeling angry, hurt and unimportant. Even now, as an
adult, I need to frequently check this out.
In a monotropic child, recognition of the existence of others will occur
only in so far as other people are engaged with fulfilling the interests which
preoccupy that child. Otherwise the existence of other people, like the
existence of everything outside the tightly focused monotropic attention
tunnel, may not impinge at all. Once the crucial step of noticing other
people has occurred there are still several further steps to be taken before
social understanding and motivation adequate to true participation in dis-
course can develop. In a social world in which rules were simple, clear and
invariant, monotropism might not be a hindrance (Segar, 1997).
It is so good when I know (because the person has told me) what an indi-
vidual is feeling. I can then adapt my behaviour accordingly. I must say, though,
that this is less likely to occur with individuals I am not directly mindful of.
Because learning a skill entails having an interest in doing so, and because
monotropism yields a very fragmentary view of the world, an uneven skills
profile inevitably develops. Both awareness and motivation are affected by
monotropism. Monotropism makes it exceptionally hard to make sense of
the continuous flux of social discourse. Further, the cognitive effects of
monotropism inhibit simultaneous awareness of different perspectives and
limit the modelling of other people’s interests, so that the monotropic indi-
vidual does not know how to fit in with them. In monotropic individuals,
awareness of other viewpoints is an achievement rather than a natural
occurrence, and may not occur until well on in adult life, if ever.
‘This should not be happening. They said they would be able to do it. I don’t
think it is useful being “friends” with someone. I really trusted them and now
they have disappointed me. ‘Well, actually, said the teacher, ‘they are allowed
to change their mind. Sometimes life does disappoint us. This doesn’t mean
it’s not good or useful to have a friend, it just means that sometimes people
have other things happening for them and they cannot always be all we expect.
For me it was a revelation that people are ‘allowed’ to change their mind. They
may have good ideas, good intentions and lots of motivation; however, they
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may become aware of some other important event or understanding that acts
as a new direction and veers them away from their original course. This was
one of the first occasions that I realized other people were truly separate to
me, had their own thoughts, and were sometimes not thinking the same thing
that I was. I was forty years old at the time.
Any achievement requires expenditure of effort and attention, and will cer-
tainly not occur without motivation. Being aware that there are other
people with distinct viewpoints is a necessary but not sufficient condition
for modelling others. The individual must also – consciously or not –
perceive a value in expending the effort required to model others. Once
again, monotropism is a hindrance in more ways than one. While in an
attention tunnel, perceiving the value of anything outside that tunnel is
hard or impossible. The need to model other people can only arise within
the active interest, otherwise it will not occur – will not be manifest at all.
Hence, if this need to model others is to arise then it will be because other
people have chosen to enter the individual’s attention tunnel and have
played an effective role there (Lawson, 2001; Webster et al., 2002).
For a monotropic thinker, if something does not work out as antici-
pated there are no alternatives available as there would be for a polytropic
thinker. Instead of the projected outcome there is total disaster (Lawson,
1998). Total disaster is strongly demotivating. People with a patchy under-
standing of the world at large, and especially of the world of fluid social
discourse, are unlikely to succeed in judging when and how to join in.
Attempts to participate socially can be among the most disheartening
experiences for individuals on the autism spectrum.
I remember being around the table on a number of occasions. Sometimes it
is to eat a meal, at other times it is to be part of some discussion group. These
occasions can be very difficult because in order to comprehend well what is
happening, I need to focus all my attention on a number of activities all at
once. For example, I need to look at what people’s bodies are doing and at
their facial expressions. I need to hear their words and process the whole event.
I also need to consider my part in any interaction and then I need to decide
if I should respond to something. After all of this I have to work out what my
response should be. I often get this wrong because at times my attention is
elsewhere focused and I miss the content and context of events. Due to these
difficulties I avoid social situations that are not within my control. I often feel
very stupid when I realize that whole aspects of conversation have been going
on all around me and I hadn’t noticed their importance. I think I feel this sense
of injustice because it will lead to people thinking I’m not very intelligent,
which isn’t true.
Finally, difficulties with communication, including speech, as discussed in
criterion 2, also obstruct social relations.
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Criterion 2 Qualitative impairments in communication as manifested by at
least one of the following:
I. delay in, or total lack of, the development of spoken language (not accom-
panied by an attempt to compensate through alternative modes of com-
munication such as gesture or mime)
II. in individuals with adequate speech, marked impairment in the ability to
initiate or sustain a conversation with others
III. stereotyped and repetitive use of language or idiosyncratic language
IV. lack of varied, spontaneous make-believe play or social imitative play
appropriate to developmental level.
These unusual features of communication can be traced back to monotropic
perceptions and thought patterns that fragment understanding, so that
features of the environment which seem obvious to people with diffuse
rather than tightly focused attention may be entirely missed. Monotropic
individuals will tend not to recognize sequences of events, because no cog-
nitive connection has been made between elements of the sequence.
Another aspect of these difficulties is the resistance to change which Kanner
(1943) identified as a central aspect of autism, which in our view follows
from the presence of deep, self-determined, attention tunnels: every unan-
ticipated change seems abrupt and requires time for adjustment (Lawson,
2001). Yet, if the current leading interest is not strongly enough engaged,
there may be instability in which tiny stimuli keep drawing the attention
(Lawson, 1998).
In order to hear what others are saying I often need to look away from them.
I do this because if I look at them, whilst they are talking to me, my listening
to what is being said is interfered with by my attending to their facial
expressions.
Conversations are sequences of events on several levels: phonetic (sound),
phonological (rule-governed sound), syntactic (grammar), semantic
(word and sentence meanings), and pragmatic (adjusted to each other’s
current interests) (Green, 2001; Lyons, 1968; Murray, 1986). On the
phonetic level, sounds heard may not be identified as connected with each
other, but may be perceived as merely some among many noises in an unfil-
tered, undifferentiated aural environment. Unless language becomes an
object of interest it will take monotropic individuals longer to realize that
language is meaningful. Necessarily, it will take longer to learn how to use
language effectively in a conversation.
In communicating with prelinguistic infants, people tend to use one-
or two-word utterances, articulate clearly and with some force, and refer
to objects in which the infant is showing an interest. For example, when
the baby has noticed a cat, we might say,Cat! Cat! Pussy cat!!’ We naturally
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use the infant’s current interest to promote language learning. However, a
number of features of monotropism may affect language acquisition. In
monotropic infants with auditory hypo-sensitivity (Bogdashina, 2003)
the attention tunnel may be so impervious that the stimulus does not
register. Those with auditory hyper-sensitivity (Blackman, 1999; Bog-
dashina, 2003) may find the stimulus overwhelming and seek to avoid it.
These children may not learn to speak at all. Other monotropic infants may
fix on language itself as a prime object of interest and attend to it single-
mindedly, at the expense of other areas of interest. Since acquisition of
spatial and bodily awareness in infants occurs at the same time as language
acquisition, the development of spatial and bodily awareness may also be
affected in children who later attract a diagnosis of autism or Asperger’s
syndrome.
I didn’t use language until I was four years old. However, when I did decide
language was helpful I used it in a pedantic way with words beyond my years.
For example,‘these food substances do not fulfil my culinary requirements’.
In some infants on the autism spectrum, complete language regression is
reported after an initial period of lexical growth (Blackman, 1999; MRC,
2001). Such infants may start to learn speech as a way of expressing
interest, and then be put off language by a change in how it is used in
relating to them.As the infant’s vocabulary gradually increases, other people
start to use words as a way of seizing the infant’s interest. For instance a
child may be looking at a ball but an adult may think the child should be
interested in the cat. Instead of looking at the ball and saying ‘ball!’, the
adult points at the cat and says ‘cat!’. Once the infant has learnt the word
‘cat’, the adult possesses a tool for manipulating the infant’s interest system.
Disruption of the attention tunnel is a painful experience. Language may
suddenly become unattractive for a deeply monotropic infant.
Speech imposes interest on the hearer. Speech is used between indi-
viduals to align interests (Murray, 1986). This is how speech is typically
used, and for most people it is an agreeable experience. Just as some people
perceive tickling as painful and invasive while most see it as entertaining
and funny, so some people find the manipulative use of language painful
and invasive.
The rules of discourse are fluid, complex, unclear, inexplicit and
charged with shifting social meanings. How do we know when people have
paused so as to give other people their turn? Why have people been saying
what they have been saying? How does their intonation fit with the
meanings of the words used? When is it appropriate to pause to let
someone else speak, and why? It is painfully difficult for monotropic indi-
viduals to learn the answers to these questions (Lawson, 2001). When there
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is so much to go wrong, the highest motivation is needed to persist with
language.
There was a time when I gave up talking for nearly a year because it just
seemed to get me into trouble.
Many monotropic people are unwilling to participate in conversation
because they find it both demotivating and painfully demanding. Those
monotropic people who have mastered semantic and syntactic rules and are
confident in their knowledge of some area of interest may nevertheless be
slow to notice restlessness or lack of interest in their listeners. Some people
may go through life without perceiving the pragmatic flaws in their style
of address: others may start to notice these inadequacies at any time in their
development. Depression is a likely outcome of this realization, and is fre-
quently reported: for several personal reports see Willey (2003), and for a
review see Ghaziuddin et al. (2002).
Furthermore, monotropic persons may see little point in communi-
cating due to confusion about autonomy and personal identity and conse-
quent difficulties in recognizing the boundaries between self and others
(Jordan, 1999; Murray, 1996).
Conclusion: implications for practice
I think that for many of us diagnosed as being on the spectrum of autism, the
demand of having to ‘pay attention’ to so many things, simultaneously, is a
nightmare. We tend to focus upon one thing at a time and this might mean
we ‘miss’ lots of superficial information that gives context to much of life
(conversation, expectation, realization). However, when one understands this,
it should make relating to us less troublesome. When I am upset I may give
out signals that can be misinterpreted as ‘difficult’. Most of the difficult
behaviour, however, seen in autism, is due to fear and discomfort. Learning to
recognize this is the first step to helping us all to develop more appropriate
communication systems.
In order to work effectively and appropriately, practitioners need to have
some understanding of the enigma of autism. Correspondingly, people
with autism need to have some understanding of the enigmas of day-to-
day existence. For people with autism, understanding is specific, context
free and dependent on awareness that tends to be highly focused and thus
easily misses much relevant information.
There are several implications for practice. In monotropic individuals
emotions are extreme – terror, ecstasy, rage and desolation alternate with
detachment. Judgements are also extreme, so the acceptance of uncertainty
and unpredictability and the existence of categorical uncertainty need to be
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taught. Emotional rewards are crucial to motivation; being aware of having
one’s emotions in tune with another’s is rewarding, and as with all
emotional states, is intensely felt by people on the autism spectrum. The
reward for neurotypical people for the effort of tuning in to the interests
and emotional states of monotropic individuals may be equally intense. For
all concerned, skills that are acquired through the pursuit of the individual’s
own interests tend to endure and be valued by them.
The following heuristics have emerged, which we consider to be useful
irrespective of the level of functioning of the individuals concerned:
Motivate connections with other people, and positive views about
society, through the individual’s interests: ‘Start where the child is.
Ensure connections are acquired through the pursuit of an individual’s
own interests; endogenously motivated links will be stronger and more
stable.
Improve understanding in order to correct false or partial connections.
Reduce task demands in complexity, time pressure and irrelevant stimuli.
Make tasks meaningful: if tasks and ideas are conveyed in small
portions, ensure that the overall relatedness of the parts is understood.
We would like to see more research into monotropism and ways of both
coping with it and maximizing its value.
Acknowledgements
We are grateful for the encouragement and advice of our anonymous
reviewers. We are also grateful to the following for their contribution to the
development of the ideas in this article, in some cases over a period of
several years: Peter Allen, David N. Andrews, Uta Frith, Franky Happé, Rita
Jordan, David Potter, Stuart Powell, Paul Shattock, Ferenc Virag and Andrew
Walker. Eve Grace and Nita Graham have played an invaluable role in
clarifying the articulation of our case. Lastly, we thank Jeanette Buirski for
suggesting the word ‘monotropism’ in 1991 to encapsulate our earliest
thoughts on autism.
Note
1 Where her comments appear as here, in smaller type and indented, Lawson, who
has a diagnosis of autism, is writing specifically from a subjectively autistic
viewpoint. Elsewhere she contributes as a fellow researcher.
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Nous proposons ici la traduction d'un article sur une modélisation du phénomène de burnout autistique. Présentement dans le cadre d'une recherche participative avec des adultes présentant un TSA. Le modèle présenté ici est développé ; il est le premier à ma connaissance et il peut servir dans divers contexte et à différents âge.... Je remercie les auteurs (et l'éditeur) des échanges que cette traduction a généré. Résumé français : La recherche qualitative antérieure indique que les personnes avec un autisme font communément l'expérience d'un burnout (épuisement) autistique et que ce dernier s'associe à des conséquences négatives significatives à l'égard de leur santé mentale, leur bien-être, et leur qualité de vie, y compris les tendances suicidaires. Les résultats obtenus jusqu'à présent suggèrent que les facteurs associés au fait d'être autiste et le manque généralisé de sensibilisation à, et d'acceptation de, l'autisme dans la société contribuent à l'apparition et à la récurrence de l'épuisement autistique. En prenant appui sur les descriptions d'adultes avec un autisme de leurs expériences vécues, nous proposons un modèle conceptuel de l'épuisement autistique (MCEA 1), qui décrit une série de relations hypothétiques entre le risque identifié et les facteurs de protection qui peuvent contribuer à, ou tamponner, l'épuisement autistique. Le cadre théorique de ce MCEA repose sur le modèle socio-relationnel du handicap et le paradigme de la neuro-diversité, le modèle contraintes-Ressources au travail de l'épuisement professionnel et la théorie de la conservation des ressources. Le MCEA offre une perspective holistique pour comprendre les facteurs individuels, sociaux et environnementaux qui peuvent influencer l'épuisement autistique via des voies directes et indirectes variées. La recherche sur le burnout autistique n'en est qu'à ses balbutiements et le MCEA pose une fondation vis-à-vis d'explorations futures de cette condition. Résumé profane : Bien que les personnes avec un autisme soient nombreuses à décrire l'expérience qu'ils ont d'un burnout (d'un épuisement) autistique, il n'y a eu que peu d'études sur ce thème. À partir des descriptions d'expériences vécues de personnes autistes, nous avons développé un modèle conceptuel pour explorer comment divers facteurs de risque et de protection peuvent interagir pour contribuer à, ou prévenir, l'épuisement autistique.
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