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ORIGINAL PAPER
Fascination and Isolation: A Grounded Theory Explorationof Unusual Sensory Experiences in Adults with AspergerSyndrome
Richard S. Smith Jonathan Sharp
Published online: 25 August 2012
Springer Science+Business Media, LLC 2012
Abstract Unusual sensory experiences are commonly
seen in people with Asperger syndrome (AS). They cor-
relate with functional impairments and cause distress. The
current study investigates how these experiences have
affected nine adults with ASs lives, as well as the coping
strategies utilised. Semi-structured interviews were con-
ducted using Instant Messaging software. Data were ana-
lysed using Grounded Theory. A number of inter-related
categories and focused codes were identified. The catego-
ries included heightened senses, sensory stress, the stress
avalanche, moderating factors, coping strategies, other
people, self-acceptance, fascination, and isolation. A model
was constructed as to how these categories and codes
interact. How these findings link with previous research
into autism spectrum disorders is discussed. Implications
for services and future research are also made.
Keywords Asperger Autism Sensory Internet Messaging Qualitative
Introduction
Autism Spectrum Disorders
Autism is a neurodevelopmental disorder characterised by
impaired social interaction and communication, and by
restricted and repetitive behaviour (RRB) (American Psy-
chiatric Association 1994). These three areas form the
autistic triad. Autism is now seen as one of the five
pervasive developmental disorders (PDDs), of which
another is Asperger syndrome (AS). To make a diagnosis
of AS, people should have normal overall cognitive abili-
ties and language development (e.g. no language delay),
but have significant difficulties in social interaction as well
as exhibiting RRBs.
Unusual Sensory/Perceptual Experiences
A significant feature of PDDs (also commonly called
Autism Spectrum Disorders or ASDs) appears to be unu-
sual responses to sensory stimuli (Frith 1989). These
unusual sensory experiences (USEs) have been described
by researchers and people with ASDs alike. Kern et al.
(2006) demonstrate the wide variety of USEs people with
ASDs can present with, (also found by other researchers
e.g. as discussed by Baranek 2002). They may be apparent
in all sensory domains, for instance in over-sensitivity in
the tactile domain (e.g. extreme dislike of being touched),
taste (e.g. dislike of certain foods), or auditory domain (e.g.
a painful response to certain types of noises). People with
autism may also appear to be under-sensitive to certain
sensory inputs e.g. not appearing to notice people talking or
touching them. They may also be described as sensory-
seeking, becoming fixated on certain stimuli (e.g. spinning
tops, spinning around or making noises). These three
Dr. Richard S. Smith formerly worked at Oxford Institute of Clinical
Psychology, University of Oxford and Oxford Health Foundation
Trust, Oxford, England, where the research was conducted.
R. S. Smith (&)Sheffield Health and Social Care NHS Foundation Trust,
St Georges Community Hospital, Winter Street, Sheffield,
South Yorkshire S3 7ND, UK
e-mail: [email protected]
J. Sharp
Northamptonshire Adult ADHD and Asperger Team,
Northamptonshire Healthcare NHS Foundation Trust,
Northampton, UK
J. Sharp
St Marys Hospital, 77 London Road, Kettering,
Northamptonshire NN15 7PW, UK
123
J Autism Dev Disord (2013) 43:891910
DOI 10.1007/s10803-012-1633-6
categories may also co-occur in the same person (Baranek
et al. 2006). They may fluctuate between environments
(Brown and Dunn 2010).Problems may also be present in
switching between senses or integrating information from
more than one sense.
Up to 95 % of people with ASDs can be shown to have
USEs (e.g. Tomchek and Dunn 2007), which may well be
lifelong, albeit with some attenuation in certain areas (Kern
et al. 2006). The severity of sensory processing problems is
correlated with poorer behavioural, emotional and adaptive
functioning, as well as more severe autistic symptoms
(Baker et al. 2008; Gabriels et al. 2008).
A small number of qualitative studies looking at first-
hand accounts of having an ASD now exist from people
with an ASD and these provide valuable insights into both
the nature and subjective experience of autism. A common
issue to emerge from many qualitative studies on living
with an ASD concerns peculiar perceptions. General
sensory problems were found as one of five themes of the
experience of autism by Cesaroni and Garber (1991).
Sensory problems were also evident in an inability to
concentrate and having restricted diets (Carrington and
Graham 2001), finding it harder to be with more than one
person at the same time, enjoying quiet alone time (Muller
et al. 2008) and a strong dislike of noise and crowds
(Humphrey and Lewis 2008; Fleisher 2001). The main
finding of Chamak et al. (2008) was that emotional dys-
regulation and unusual perceptions were the core symp-
toms of autism, throughout the lifespan. The perceptual
differences reported were in multiple sensory domains and
varied in different accounts between being hyper- or hypo-
sensitive, switching between these two or in integrating
different senses. The accounts described perceptual issues
leading to problems in social situations and places (e.g.
problems having people near them or bright lights) and
with language (e.g. listening and watching people speak).
The perceptual problems were also said to lead to repetitive
behaviours both in order to calm down (e.g. rhythmic
movements or seeking deep pressure), and also as a source
of pleasure due to a fascination with certain patterns,
smells, tastes or movements.
Some researchers have used qualitative methods to
investigate USEs specifically in people with high-func-
tioning autism (HFA)/AS. The researchers have related the
USEs to the triad of autistic impairments. For example,
Chamak et al. (2008) used a form of content analysis with
15 autobiographical accounts and five interviews. Jones
et al. (2003) used modified Grounded Theory to examine
five web pages written by people who said they had AS and
found four key themes in their perceptual experiences:
turbulent sensory perceptual experiences, coping mecha-
nisms for them, enjoyable sensory experiences and the
sense of being different to other people.
The Current Study
Chamak et al. (2008) and Jones et al.s (2003) studies, as
well as previous studies, have relied upon the writings of a
few very talented and well-known people with ASDs or are
based on interviews with small sample sizes, and/or people
whose diagnosis could not be verified. Additionally, the
methodology used did not allow relations between factors
to be demonstrated.
A qualitative methodology was chosen for the current
study due to the slight lack of research in this area and to
help retain the richness of the data that could be gathered.
Grounded Theory offers the potential to generate a theo-
retical framework for how USEs affect the lives of people
with ASDs. It addresses research questions around indi-
vidual processes, interpersonal relations, and the reciprocal
effects between individuals and larger social processes
(Charmaz 2006). Furthermore, Grounded Theorys stress
on the processes by which individuals construct meaning in
relation to their social context (Charmaz 2006), makes this
a useful methodology in helping investigate how USEs
affect the social lives of people with ASDs. Modified
Grounded Theory was used in a flexible way for the current
study and some of the modifications deemed appropriate
are presented in the Method section.
The Internet is seen as very important in communication
for people with AS, as they feel more confident using this
medium (Davidson 2008; Jones et al. 2003; Muller et al.
2008). As an example, Singer (1999), while writing about
her discovery of having AS, said that on the internet,
freed from the constraints of NT (neurotypical i.e. a person
without autism) timing, NT ways of interpreting body
language, free from the information overwhelm of eye
contact, the energy demands of managing body language,
they sound, simply, normal, and often, eloquent. It is
also thought that as people with ASD often suffer from
high rates of social anxiety (Kuusikko et al. 2008), this
medium may provide a more relaxing form of interview
because it will take place in their own home and they will
not need to meet a new person.
Online Instant Messaging (IM) has previously been
described as a viable and reliable method of data gathering
(Kazmer and Xie 2008; Stieger and Goritz 2006) and was
used to gather data in the current study. Stieger and Goritz
(2006) and Kazmer and Xie (2008) outline some of the
benefits of using IM for research interviews. These include
its ability to interview hard-to-reach populations, lower
costs, the ease of scheduling interviews and the lower risk
of transcription errors. Additionally, participants can give
more thought out responses than in face-to-face conversa-
tions. However, with the benefits come some downsides
such as having less control within the interview, partici-
pants potentially being distracted, other people entering the
892 J Autism Dev Disord (2013) 43:891910
123
room, and participants non- and para-verbal language not
being visible. There can also be some conversational
disorder as participants may not have fully completed an
answer before the next question is asked. As compared
with email interviews, IM can give more evidence of a
persons thought process, as well as having a lower rate of
participant attrition. It was therefore important to be aware
of some of these issues in the current study and attempts
were made to ameliorate these problems, for example by
adjusting to a participants typing speed and pausing before
asking the next question.
The present study aimed to understand how USEs affect
the adult with AS. People with AS were chosen due to their
normal language development and overall cognitive abili-
ties. Using modified Grounded Theory methodology, the
study aims to generate a theory, which describes the nature
of the relationship between USEs and the effects on the
persons internal experience, social life and daily func-
tioning. The following research questions were
investigated:
1. How do unusual sensory experiences affect people
with AS in their lives?
2. What strategies do people with AS adopt in response to
these experiences?
3. What do participants think the long-term effects of
these experiences have been?
Method
Participants and Procedure
Nine participants were recruited and interviewed from a
local service for adults with HFA/AS. People who had
received a diagnosis of AS in either adulthood or childhood
were to be included, but only participants with adult
diagnoses ended up being recruited. People on psychotro-
pic medication were included (this was noted). It was
planned that people who did not report any USEs were to
be excluded as this is the topic of the study, but this applied
to none of the potential participants.
Participants had received a diagnosis in adulthood by
clinical psychologists in the local service using the Adult
Asperger Assessment (Baron-Cohen et al. 2005) with the
person and the Diagnostic Interview for Social and Com-
munication Disorders (Wing et al. 2002) where possible
with a relevant relative, as well as clinical judgement.
Methodology
Nine participants were interviewed with seven completing
a second interview. Interviews were conducted between
two secure email accounts using IM software embedded in
the internet browser. Interviews began with demographic
information being collected before questions were asked
about whether the participants were under- or over- sen-
sitive to certain sensory inputs and whether there were any
they sought out or particularly liked. This was followed by
an open-ended question about how this had affected the
persons e.g. how do you feel these unusual sensory
experiences have affected your life?. As is standard with
Grounded Theory, the interviews mostly proceeded using
the participants own answers as the basis for the following
questions. Additionally, questions were partly guided by
the sensitising concepts and codes highlighted in the iter-
ative Grounded Theory process e.g. to help thicken certain
areas of data. For less loquacious participants, an interview
schedule was drawn up which was used as a guide for
questions, although this was very rarely used. Brief feed-
back on the use of IM was requested at the end of the
interview. Interviews lasted between 60 and 90 min.
Design
The term Grounded Theory does not represent one sin-
gular method or process, but instead can be seen as an
umbrella term for related methods, with conflicting opin-
ions and unresolved issues (Cutcliffe 2005); something
common throughout qualitative research (Elliott et al.
1999). Therefore to aid the researcher and the reader,
various issues were considered in conducting and reporting
the research, further information regarding the design can
be requested from the researcher.
Modified Grounded Theory Analysis
Overall the modified version of Grounded Theory used was
that outlined by Charmaz (2006), with modifications made
through the discussions of Elliott et al. (1999) and Cutcliffe
(2005). A summary of the iterative modified-GT analytic
process can be seen in Fig. 1 and is also briefly described
here:
Initially, sensitising concepts were found through a
brief literature search to inform some of the data gathering.
Initial line-by-line coding of the printed transcripts of the
IM interviews was conducted between each interview; the
initial codes that were most significant and/or frequent
were raised to focused codes. Codes were constantly
compared to the data and their definitions refined, a process
occurring throughout analysis. Memos were written to help
these processes.
Theoretical sampling was conducted with new partici-
pants or through re-interviewing participants to seek
important data in developing the emerging theory. Some of
the memos consisted of narratives of the processes
J Autism Dev Disord (2013) 43:891910 893
123
described in order to highlight concepts and areas that were
thick or thin and therefore requiring more data from theo-
retical sampling. Other memos outlined tentative models of
the relationships between categories and the processes
occurring. Once theoretical sufficiency had been achieved
regarding the properties of categories and the links between
them, data collection ended. It was decided that theoretical
sufficiency had been reached when no new themes were
identified, a factor-relating theory could be made and a
coherent narrative of the processes occurring could be
completed.
Credibility checking occurred towards the end of anal-
ysis through asking participants directly during later
interviews or emailing the category properties to partici-
pants and requesting feedback as well as asking a colleague
to read two categories and the data connected to them.
Participants mostly reported categories were representative
of their experiences. For example, Lucy stated:
Wow..that was really really wierd hearing those guys
describe my life. I feel bad for them because i know
how they feel and its not good Your writings areaccurate as far as i am concerned
Any suggestions made were subsequently used.
Throughout the process, consultation was given from a
specialist Grounded Theory researcher.
In order to maintain reflexivity during the process, a
research diary was kept throughout the process and an
interview was conducted with other Grounded Theory
researchers. This helped highlight the authors theoretical
orientations and personal anticipations and how these may
affect later coding. Further information regarding the
Modified Grounded Theory process can be requested by
contacting the first author of the paper.
Ethical Considerations
Full voluntary informed consent was gained from partici-
pants. They were given the right and freedom to withdraw
at any time during the interview or up to 2 weeks after.
Interview data was stored securely. Ethical approval for the
study was granted by an NHS Research Ethics Committee.
Results
Participants Characteristics
To help contextualise the results on the participants, the
participants demographic information can be seen in
Table 1 including the unusual sensory experiences they
reported.
The Participants Experiences
The participants experiences will now be described in
terms of categories (in bold and underlined) and (if present)
their focused codes (in italics), alongside selected relevant
quotations. The links between these categories and codes
are represented in Fig. 2 to show the immediate, short-term
and long-term effects of USEs for the participants. These
categories and their subordinate codes are presented in
Table 2.
Some participants struggled slightly with spelling and
typing. Because of this, and the large amount of text-
speak abbreviations for some participants, some
Fig. 1 The modified Grounded Theory process used in the currentstudy
894 J Autism Dev Disord (2013) 43:891910
123
Ta
ble
1D
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icd
ata
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par
tici
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tsan
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SE
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(an
on
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)
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eth
nic
ity
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n
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atio
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edic
atio
nS
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ryis
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ber
t3
13
0W
hit
e
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tish
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ne
A-l
evel
s
(bac
hel
or
star
ted
bu
tn
ot
fin
ish
ed)
Un
emp
loy
edS
ertr
alin
e(a
nti
-dep
ress
ant)
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siti
vit
ies
in5
mai
nse
nso
ryd
om
ain
s
Lu
cy4
94
7W
hit
e
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tish
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as
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,sm
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or
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nem
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,ta
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J Autism Dev Disord (2013) 43:891910 895
123
quotations have been modified slightly for readability when
reporting participants data, although the original quota-
tions have been used as much as is practical.
Summary
As can be seen in Fig. 2, the links between these categories
(in bold) and focused codes (in italics) is somewhat com-
plex with some two-way interactions, moderating factors
and conditions required before certain processes appear.
These will be expanded upon in the main body of the
results section and demonstrated by relevant quotations.
Participants USEs stemmed from their Heightened
Senses. These could either be a source of stress for par-
ticipants or of fascination.
Adverse sensory events caused Sensory Stress where
the participants felt fear or anger, with the strong com-
pulsion to either escape or attack the source of the stress.
Escaping from stressful environments often led to people
learning to avoid such environments and this often led to
social isolation.
However some Moderating Factors could affect how
strongly the sensory events affected the person. Reciprocal
relationships were present with one end of a pole making
the adverse sensory event more stressful and the other end
making it less so:
1. A single input (e.g. one noise) was not as stressful as
multiple inputs were.
2. This was similar for low versus high intensity hits.
3. Ordered and predictable environment ameliorated the
stress, while chaotic environments worsened it.
4. If the participant was calm, this lessened the impact of
the adverse sensory event, while an already stressed
person was more affected.
This last moderator set up a vicious cycle (Sensory
Avalanche) where stress caused the person to become
more sensitive to adverse sensory events, causing them
subsequently to become more stressed and therefore more
sensitive, creating a vicious cycle.
Some participants had discovered Coping Strategies
that impacted upon these moderating factors such as
dampening the intensities, making their environments more
predictable and ordered, blocking out other inputs or using
calming strategies when in stressful situations.
Other People became important factors at different
points:
Heightened Senses
Sensory Stress: fear/anger, attack/escape
Coping Strategies(If happened upon)
Fascination
Distracting
Pleasurable/calmingSkills/ abilities
Avoidance
Positive Interactions with others
Long-term pursuits
Sources of sensory stimuli
Self-Acceptance
Negative interactions with others
CalmSingle input
ChaosMany inputs
Order
High Intensity
Low Intensity
Other People
Moderating Factors*
* The Stress Avalanche
Other People
Positive Interactions with others
Negative interactions with others
Anxiety
With awareness and affection and communication and time
If found at school
If not held back by social skills and practicalities
Isolation
Fig. 2 A model of the processes resulting from USEs
896 J Autism Dev Disord (2013) 43:891910
123
1. They could be the sources of sensory stimuli e.g.
through forming noisy crowds.
2. They could interact negatively to a persons USEs by
then rejecting that person, contributing to their
isolation.
3. However certain people, if certain conditions were
met, could become sources of positive interactions,
offering support and helping the person cope with
sensory stressors.
Heightened Senses could also be fascinating for the
participants, being pleasurable or calming. However, as a
result, these sources of fascination caused a lot of dis-
traction in day-to-day life, causing them to have negative
interactions with others.
The heightened senses could then give the person certain
skills and abilities that other people did not have, and if the
person found a practical application for their ability and if
they were not held back by their poor social skills, they
could find a long-term pursuit e.g. a job or hobby. This then
could help the person have positive interactions with other
people.
Participants appeared to learn to accept their isolation
and therefore themselves, finding other things from which
to gain self-esteem e.g. becoming stronger as a person as a
result of the hardships they have faced. Their special skills
could also be a source of pride for the person and praise
from others. These could all result in a degree of self-
acceptance.
Participants Narrative
Heightened Senses
Overall, participants described having heightened senses;
their sensory experiences were unusual in that they
appeared more extreme than for people without ASDs.
That is, when the initial hit of the sensory stimulus was
experienced, the stimulus appeared to be over-amplified or
greatly magnified beyond normal experience:
Robert: Everything seems x amount of times louder
or brighter than probably other people see and hear
things All of my senses feel like they areoveraccentuated
The particular stimuli that were found to be stressful or
pleasurable were quite idiosyncratic to each participant.
What one person found enjoyable another found irritating:
Adrian: birds tweeting makes me very very angry
and makes me panic
Mike: OK noises include mostly anything of nature,
birds, waterfalls, etc. There isnt much in nature
which irritates me
Sensory Stress
Fear/Anger As a result of heightened senses, some
adverse sensory events could be very powerful and
unpleasant. Emotionally, reactions could range from a
feeling of strong discomfort, anger to overwhelming fear
and even pain.
David: I particularly dislike bright sunlight. I hate
conservatories. The irritation it causes is madden-
ing if a fly came into my classroom, the buzzinggoes through my head like a saw (pain)
John: i was very scared. i just felt like
ARRGGG!!!
Robert: I know that may seem extreme of a
description but it feels like Im being raped. Like I
am being violated.
During these experiences, confusion appeared to reign:
Table 2 The categories and the focused codes within them
Category Focused codes within category
1. Heightened senses
2. Sensory stress 2a. Fear/anger
2b Attack/escape
2c. Avoidance
3. Moderating factors 3a. Single versus many inputs
3b. Low intensity versus high intensity
3c. Order versus chaos
3d. Calm versus stressed
4. The Stress Avalanche
5. Coping strategies 5a. Blocking out other inputs
5b. Dampeners
5c. Creating order
5d. Calming strategies
6. Other people 6a. Source of sensory stress
6b. Negative interactions with others
6c. Positive interactions with others
7. Isolation
8. Self-acceptance
9. Fascination 9a. Pleasurable/calming
9b. Skills/abilities
9c. Long-term pursuits
9d. Distracting
J Autism Dev Disord (2013) 43:891910 897
123
Lucy: you know when bubbles come up uncontrol-
lably when you open a bottle of pop, thats what it
feels like in pictures in my head
Adrian described his rushed thought processes as:
what has happened, why it happened or happening
why why why
Attack/Escape In response to the emotional reaction, the
person may try to ignore the sensory experience initially, or
power through with difficulty, but these were the
exceptions:
Q: Are there places you avoid because of your
dislike of plates or balloons?
John: no just power through
Adrian: part of being in the leisure centre is I have
to combat my sensory system all the time Im there
However, mostly these experiences ended up being all
encompassing; more than simply being a distraction, the
fear or anger caused a lot of the participants to drop
everything:
Robert: I shut the blinds and try and ignore them but
I cant. Well, it just stops me doing what I want to do.
I become preoccupied.
Mike: I find I dwell on each noise and it irritates me
and I hear them very loudly.
Mostly the person is overwhelmed by the compulsion to
end the experience by attacking it or escaping. For
instance, two participants described attacking sources of
the sensory stress:
John: if someone touches me when im rocking i will
thrust towards them.
Mike: I used to go mad if a fly came into my
classroom I tried to ignore it, but it sailed towardsme and buzzed past my head. I seized a stack of exam
papers on my desk, rolled them up and went after it.
However, the most common and perhaps most-
straightforward action taken was to escape the source of the
stress. Importantly, it appeared like this wasnt a choice for
the participants, more of an irresistible compulsion:
Rebecca: situations would become too much for me
and Id need to get out
John: it \the sound of balloons[ makes me freakout. i cover my ears. i run like a little girl so afraid
sometimes screaming again covering my ears trying
to make it stop.
Avoidance Escape led into both avoidance of social pla-
ces and rejection from other people, severely restricting
their social sphere (see later: isolation). Lucy explained this
process:
i would make excuses to go outside, say i was hot, it
was quieter in the night in town, but very soon i
would just not go to clubs pubs etc. i felt like i didnt
have a choice it was just to painful to stay.
Moderating Factors
There was not a direct relationship between the adverse
sensory event and the effects it causes. Importantly, some
factors could make the sensory stressors better or worse.
These factors form reciprocal relationships with their polar
opposite, with one pole worsening the experience and the
other lessening the stress. These modified the relationship
between the categories of heightened senses and the
resultant sensory stress.
Low Intensity Versus High Intensity Not all sensory
inputs were necessarily stressful but required reaching a
certain level of intensity to become so.
Rebecca: i dont like sharp noises like alarms
etc.visually i need to have just the right amount oflight if it is too bright it gives me a headache. idont like strong tastes
Single Inputs Versus Multiple Inputs The more inputs
there were, the worse the effect became. One input could
be fine, or just about bearable, but more than one and the
effect was multiplied.
Lucy explained: alot of people talking in a room, or
outsidecars and machinery and birds etc. just onenoise really loud is not as bad.
David: I can listen to loud music, or talk to people,
but not both.
Order Versus Chaos If a situation was predictable and
there was a sense of control about the situation, the expe-
riences were lessened and easier to cope with. However
unpredictability and the feeling of being out of control
conversely made the experiences unmanageable. Predict-
ability helped the person prepare for the coming experi-
ence. Preparation beforehand could therefore be key.
John explained what made his USEs worse:
898 J Autism Dev Disord (2013) 43:891910
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i feel very uncomfortable/anxious wherever i go if i
hadnt had time to plan the journey or the journey/
adventure hadnt gone to plan.
James: It is worse if people are moving around a lot
e.g. in busy streets. Not so bad if they are orderly e.g.
at a concert.
Q: predictability and control seem really important
in changing noise from being really troublesome to
manageable then?
Robert: pretty much sums up everything in my life
to be honest.
There was also a reciprocal relationship between order
and calm with them both feeding into each other:
Ruth: When we become stressed everything
becomes more solid and real and permanent, but
when we are calm, we can better accept the changing
state.
Stressed Versus Calm Participants described that the
calmer they felt before the adverse sensory event, the better
they tolerated the sensory stressors, whereas previous
stresses caused them to bubble over quickly and fail to
cope with the inputs.
Ruth: i feel awkward when people touch me and its
ok, but when I am stressed it becomes unbearable
The Stress Avalanche
A major and unfortunate result of the stressed versus calm
moderator comes from the fact that the adverse sensory
events themselves cause stress, which worsens the sensi-
tivities. So a vicious cycle is set up, which Robert named
well as an avalanche effect.
Basically because of the noise of the fan it madeeverything else seem louder One thing getting ontop of another and making the other thing wor-
serthe noise gets too much it just becomes whitenoiseI was always on tenterhooks.
He continues:
my life was a living hell.
Coping Strategies
Some participants had found strategies to cope with their
USEs that used the above moderating factors to make the
heightened senses be less stressful. There appeared to be no
obvious link of particular coping strategies being used for
particular USEs. These techniques were mostly only pres-
ent if found by accident:
James: Regarding the bag, I am used to carrying lots
of things around with me, as I am always worried
about not being prepared for any situation! In fact,
my wife often complains about the amount of stuff I
take with me! I just noticed that the pressure from the
bag is very relaxing.
Ruth: my tai chi teacher was experimenting on me
one evening and i realised that being squeezed is very
comforting
Sometimes the diagnosis helped raise awareness of the
USEs and allowed them to work on strategies:
Ruth: i only really became aware of what was
happening when i got the diagnosis, before I knew I
didnt like it, but thought that it was normalnowim able to work with it, i like it, it fascinates me the
working of the mind
Adrian: i have a file i keep with all my brain stuff so
if i need help or need to help myself i can use this file
and it contains alot of info about me and what i can
do and what others can do to help me.
Dampeners Many participants used strategies to dampen
down sensory experiences, making them less intense, and
thereby help themselves to cope with them e.g. via cov-
ering their ears, using ear plugs, listening to music while
out or wearing dark glasses.
One person dampened down the overwhelming sensory
experiences by distracting herself by counting, while others
took this distraction to the extreme and zoned out to go
somewhere else while in the stressful places:
John \while rocking[: music comes into my head,and patterns, i forget everything. i forget that theres
anything around me
Blocking Out Other Inputs Another method was for the
person to avoid eye contact or close their eyes when being
spoken to in order to reduce the inputs and so avoid being
overloaded. This was despite being aware that this might
have negative social consequences:
Lucy: alot of ntps1 find that rude
James: I can be a bit perturbing for people around
me
1 * ntps: neurotypicals: a commonly-used word by people with
Asperger Syndrome to describe those without an autistic spectrum
disorder.
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Creating Order Creating order and making life more
predictable was important for the participants in order to
feel calmer and lessen the effects of sensory stressors.
Lucy: If im going somewhere new i need to go look
at it on my own first and get the layout
Q: How can you manage doctors touching you?
Robert: Because I am prepared for it. I know what to
expect when I go into a consultation.
Unfortunately this need for control, led one participant
to be misdiagnosed:
Ruth: Before being diagnosed with AS I was mis-
diagnosed about 10 years ago with OCD. Everything
had to be a certain way or it wasnt correct.
Calming Strategies Some participants found ways to
calm themselves to help them cope:
James: I like heavy pressure, and very often prefer
to carry a heavy bag on my shoulders when walking
around.
Robert: Antti is a little cuddly hedgehog I carry
around with me Hes soft. If Im in a stressfulsituation and need reassurance I can cuddle him.
Robert had also habitually turned to alcohol in the past
in order to calm himself sufficiently and had to drink
\himself[ to sleep.
Other People
Inevitably other people became involved in the partici-
pants USEs and often were perceived to cause the person
problems. They could be a source of sensory stress. The
vast majority of people reacted negatively, while under
certain conditions, some people became sources of
positivity.
Sources of Sensory Stress The participants could struggle
in social situations, as there tends to be an overwhelm-
ing amount of sensory information here. As a result of
their heightened senses, talking to neurotypicals was
beset with difficulties as participants had to try focusing on
body language, speech and emotional cues simulta-
neously, which could overload the person and cause them
stress.
Mike: I think that being with other people is the
biggest cause of stress. I can enjoy their company to
an extent but I like to be able to leave, and I do live
alone.
As seen previously in Avoidance, neurotypicals were
perceived as situating themselves in over-stimulating and
stressful environments such as open-plan offices, shops or
pubs. Here the sources of sensory stress were other people,
chattering, shouting or moving around. This occurred
alongside many participants fears of other people due to
their social skills difficulties.
James: I avoid crowds because I get overwhelmed
with the motion of people moving about too. Ideally,
I would never leave my house!
As they explained, this avoidance could quickly pro-
gress into isolation (see later). Avoidance could be mixed
with a desire to mix with others, with a strong ambivalence
present. Participants therefore appeared torn:
Ruth: Its very strange because mentally i wanted
them to hug me, but physically i couldnt tolerate it. I
think thats the same now
Negative Interactions with Others As will be described
further later, participants were fascinated by certain USEs.
However, this could cause them to be distracted in social
situations, with unfortunate consequences:
James: I notice odd things about their voice and
appearance and can easily become distracted so that I
cannot follow what they are saying.
Lucy: I find it very hard to look at a person and
listenwell impossible if i really want to listen
Sometimes however, it seemed the participants poor
social awareness could save them from noticing others
reactions:
Q: How do you think your pupils see you after epi-
sodes like this? If you had to guess?
David: My clinical psychologist is always asking me
things like that, and I confess that until you said it, it
hadnt occurred to me to wonder what they would
think.
It was seen that neurotypicals reacted to the participants
reactions to sensory stress in a negative way unless certain
factors were present. A lot of the time, other people could
be unsupportive or dismissive:
Q: What did the people below think about the matter?
\regarding their noisy air conditioning unit[Robert: They washed their hands of it. They werent
interested.
Worse than this, neurotypicals could reject the person,
quickly cutting contact. This rejection was often coupled
with the persons avoidance of neurotypicals.
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Lucy: when they were arranging nights out and i
knew i couldnt go, i felt left out.
Mike: I dont really know what they think after Ive
left, but sometimes people have been surprised.
Theyre generally not angry about it, but I dont often
get invited back.
They could be cruel and mock the person:
John: other PEOPLE, well people dont understand
and can be cruel in life, name calling. if i show im
afraid of something it always gets thrown at me so
hard it drives me to the point of hiding away from the
world, thats been the case most of my life
This process of rejection led to long-term effects on the
person in terms of isolation (see later).
Positive Interactions with Others However, with the right
conditions, neurotypicals could be positive sources of
support and coping strategies. If the neurotypical had
affection for the person with AS, and was aware of the
difficulties the person has, and there was a good level of
communication between them, and after a period of time to
learn, then this could lead to knowledge of how to help.
The diagnosis of AS therefore appears to be key. Many
participants talked about how helpful the diagnosis was for
helping them and others cope with difficult situations:
Robert: Now I have a formal diagnosis of Asper-
gers - and even before when it was suspected - it
helped me and everyone around me realize I had
certain issues and how certain situations must be
handled.
James: It is very reassuring both to me and people
around me if they can see a mechanical explanation
e.g. your brain is wired differently. I like to see it
more as the tolerance you afford foreigners in a dif-
ferent culture.
Lucy poetically explained the need for awareness of
these problems and of Asperger syndrome:
without a care label on the expensive cashmere
jumper your gonna ruin it first time you wash it.
John demonstrated the difference affection makes in
being understanding:
Q: is there anyone in your life now that finds it hard
to understand your fear of noises?
John: the world apart from my loved ones mypartner, my daughter. everyone else may pretend but
dont really understand.
However James explained, even though someone was
very close to him (his wife), awareness was needed:
My wife is very aware of it. She used to think that I
was just being rude or acting weirdly, but now that I
have a diagnosis she at least understands why it
happens, even if it is still very frustrating.
Ruth discussed that awareness and closeness (to her tai
chi teacher) can help communication of the problems and
solutions, with a little help from the Asperger Service
psychologist:
My psychologist mentioned about the squeeze
machine, so I told my tai chi teacher about it and he
started trying to touch me using different amounts of
pressure to find what i could tolerate (as a scientist,
experiments appeal to me) so this has been useful
While time was an important factor, as described by
John when his partner came up with a helpful coping
strategy:
Q: How long until she did that?
John: 4 yrs. whatever i do people just need to persist
with me and people that know me just know its me.
Robert also explained how together he and his mother
came up with certain coping strategies through good old
trial and error.
When others were being helpful and accommodating,
allowances/adaptations to the environment were then
made, coping strategies given and support and reassurance
provided. Adrian summarised this all nicely with regards to
his mother:
she does lots of things sometimes it can be as simple
as getting me to put my head phones in and play
music to ground myself and other times have to get
out and away so she takes me away from where ever I
am, or reassures me im ok and to keep trying to focus.
Her motto is feel the fear and do it anyway
Isolation
As described previously the persons avoidance of stressful
places and rejection from others, led to participants quickly
becoming very socially isolated.
Mike explained the process of escaping from social
situations turning into avoidance and then into isolation:
I would still go there but wouldnt want to stay there
for very long. I would avoid most places that are
loud, as a matter of routine. I spend most time away
from these which is why I said Im not in that posi-
tion now: I rarely socialize.
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The transition of leaving school could exacerbate this
process as life suddenly became disrupted and unpredict-
able, worsening the sensitivities:
Q: When did you start avoiding places?
Robert: I think it was when I left school. Major
withdrawal, depression, feeling suicidal. Ive come to
realize its because of my condition and the fact there
was no planning for what was a major transition in
my life I think the sensitivities really changedwhen I moved away from home. I think that was the
biggest transitional change because the one important
place I had been used to wasnt my home anymore
and I had to get used to a whole new lot of sounds and
smells.
The loneliness appeared to be part of a life-long process
however that could be in place as early as junior school.
Who rejects who, the person with AS or the neurotyp-
icals, appears to be a chicken and egg scenario. Mike
describes how it starts:
Q: I was curious about this process of falling out of
groups, whether you avoid or they fail to invite you or
both perhaps?
Mike: both, it begins when theyre a little unsure
about me and I dont really try hard.
Before the chicken and egg scenario ended up with
absolute isolation:
Q: Who do you think decides to break off contact
first, you or other people?
Lucy: definitely me..dont want to feel uncomfort-
abledid try on a few occasions to make more of aneffort but its just to hardi understand the lonelinessis of my own making in a world of ntps.
While in this example she is strongly saying she decided
to end things, as has been described before she had also
described a process of stopping being invited out.
Once stuck in there, the hole of isolation was difficult
to return from.
Q: Are there places you can socialise instead?
Lucy: no havent found any so far
Q: So have you been able to break the loneliness a
bit? Is there ever a way back?
Mike: no, no way back.
Positive relationships with people that had been estab-
lished early on could help prevent the isolation being worse
however (e.g. family or friends):
Q: So you started avoiding going out with your
\school[ friends, how did they react?
Rebecca: i cant really remember, they are very
accepting of me as i am, so it wasnt really a big thing
to them. they found alternative ways for us to
socialise i.e by comin to see me or doing things in
their house where id feel more comfortable.
Some participants learnt to accept the loneliness:
Lucy: I dont think you can stop it or make it go
away you just have to accept thats how it is and learn
to live with it.
However a lot of the time, isolation could then lead to
depression. Six participants were prescribed anti-depres-
sants, while one had been in the past. Depression lowered
motivation and worsened the isolation, in another vicious
cycle. For instance, Mike talked about the one social group
he felt he could join: the local Aspies Group:
Mike: It was OK, not too noisy or scary really. I will
go there again, but recently I havent felt like it. We
would play pool or cards or do a quiz.
Q: Would you like to go again?
Mike: Yes,\but[have been too miserable until theCitalopram kicked in again.
Q: So what do you think about not being able to
socialise with people without AS (neurotypicals)?
Adrian :i think it is hell i feel so alone and lonely
Negative self-beliefs could also result, with participants
at various times feeling as though its just them that is
going through these experiences, that theyredifferent or
that they were a freak or an alien.
Again the diagnosis of Asperger syndrome appeared to
be a help. Rebecca describes what the benefits of an earlier
diagnosis would have been:
i think it would have saved a lot of the wondering
whats wrong with me and i could have learnt to cope
with things better sooner
Self Acceptance
Participants described the hardships endured due to sensory
stresses as causing them to begin to change as people. The
difficulties caused an inner resilience, strength and self-
awareness.
Adrian: they \the difficulties[ have gave me abetter understanding of myself and abilitys good and
bad helps me grow stronger for future
John: i hav learned i am so much more in other ways
too. i am who i am. ive had many ups and downs
through life many of them caused by not knowing
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who i was but now i have an understanding of who i
am and i wouldnt take that back knowing that theres
many things i can do that other people cant. im just
John
As can be seen later, pride in their abilities as well as
other peoples admiration and praise of the abilities par-
ticipants had as a result of their USEs, also helped their
self-acceptance.
Fascination for Stimuli
Pleasurable/Calming Aspects of Sensory Experi-
ences Alongside all the above troubles, the heightened
senses could lead to fascinating and pleasurable
experiences.
Mike: I like to look closely at things and see the
details. I enjoy using essential oils for scenting the air
and massage.
James: For craving, I have an intense love of all
kinds of music, which has a very beneficial effect on
my mood. Music is kind of an obsession for me.
They could be just as a powerful experience as the
sensory stressors described above. Participants were sucked
into the sensations and the details; this was calming and
pleasurable. They were compelled to observe them,
spellbound.
John: i dont know how long i was there but i
remember car behind me beeping and people shout-
ing at me as i watched the \traffic[ lights changedover and overI was intrigued.
Skills/Abilities The heightened senses meant some par-
ticipants had remarkable abilities.
Robert: I used to hear the trains going past and they re
5 miles away. I used to hear the cockerel 2 miles
away in the distance in the morning.
Lucy: i recognise and remember alot of smells and
recognise people by the fabric conditioner they use as
much as their face.
The attraction of these stimuli, with the right conditions,
could turn into long-term practical pursuits (see later).
The participants eye for detail was very useful in cer-
tain areas where small mistakes can be critical, with par-
ticipants describing strengths in maths, machines/
computers, languages, or even IQ tests and martial arts as a
result of their fascination with details.
Distracting Aspects of Fascinations However, sensory
fascinations could be double-edged swords. When partici-
pants were drawn into certain details, this was at the
expense of all else; they were stuck in the moment and
zone out, other details could pass them by, which affected
their social awareness.
Lucy: i seem to look at different things in a room or
on tv to other i notice and remember the background
rather that whats going on centre stage.
Mike: I have also missed all sorts of things. I missed
when a girl might have been interested in me once.
Also, things like missing a bus while reading the ads
in the shop window
When mixing with people who dont understand, this
eye for apparently irrelevant details can cause negative
interactions, sometimes with disastrous and terrible
consequences:
Ruth: I used to get beaten up when I was a teenager
and the bullies would always start by saying what
are you staring at? I used to think this was just an
excuse they would use to start a fight, but now I
realise I probably was really staring
Long-Term Pursuits The fascinations and abilities
described before could blossom into longer-term pursuits,
hobbies and careers. Details could be seen that other people
either miss or are probably not able to detect, as seen
previously. However the development of a specific pursuit
seemed to rely on the person having a specific interest
within that sensory modality:
Lucy: words just dont seem to have the way of
grabbing my attention like numbers or symbols did so
didnt pay them any attention reallythey arentconstant they change in meaning
As a result school subjects, hobbies and jobs were
chosen and helped by these fascinations, but specifically in
areas requiring a fine eye/ear/tongue etc. for details:
Mike: \about being a car mechanic[ It has beenuseful to be able to see fine details when fixing
something, or figuring out why something broke, or
spotting a fault appearing before it becomes critical.
Adrian: what made me a great chef was my deter-
mination to be the best and my passion for fair play
team work as i can make flavours and textures of food
just by seeing it and can know what fits with what and
my over sensitive tastes. so i could know really what
food tasted like if you taste olive oil you may taste
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the oil, i can taste the olive and other fruit oils use to
make it.
However this didnt always happen. Rebecca, despite
having similar abilities, contrasted sharply with Adrian,
above.
Q: Have you been able to use this ability (acute
hearing and heightened senses of smell and taste) in a
practical way e.g. for a job, a skill or a hobby
perhaps?
Rebecca: um no not really
Q: Has there been anything youd thought of youd
like to do with them?
Rebecca: not really.
This was dependent on the person finding a practical
application for their skill (e.g. when comparing Adrian and
Rebecca above), e.g. having positive experiences at in
education and not being overcome by their social diffi-
culties, amongst other practical barriers.
Q: So you were a great chef, how did you find out
you were so good at it?
Adrian: i just analysed all my skills and experiences
and it all pointed to food so then i went to college and
got on really well with a particular chef who found
my talent and helped me win awards
Q: Whats held you back from pursuing your aims
\of being a computing engineer[ ?Mike: There would be several fronts: Economi-cally I have had minimal resources to buy even basic
equipment. University was at the wrong time for me
and I didnt finish there I think that a degree mayhave led to more job offers. I have attended numerous
interviews unsuccessfully. However the degree isnt
really what counts, its probably about finding the
right person for the job and I dont really fit
These long-term pursuits helped gain positive interac-
tions and admiration from others and help self-acceptance:
James: I have always been very strong at grammar,
spelling, flow, and so on. This has helped me obtain
an expert position at work as an editor of others
work, and also helped me write a novel, draft letters
of complaint very quickly, and so on. A lot of this has
to do with sound. I can tell very readily when a
sentence sounds wrong.
Q: What do others say about this ability?
James: They admire it greatly.
Jamess abilities at work helped his manager agree to
adjustments to his working conditions to help him cope
with his sensory stressors:
I work solely from home. I dont have to commute,
which always used to exhaust me. I can wear comfy
clothes, avoid small talk, and listen to pleasant
ambient sounds. My productivity has improved
massively now that I can control the environment I
work in and people often cite me as an example of the
benefits of home working
On the other hand, the pursuits also tended to be unso-
cial ones, worsening participants avoidance, as Lucy light-
heartedly commented:
maybe aspies are not really more intelligent we just
study more so we dont have to socialise!!
Discussion
This study investigated the views and experiences of nine
people, who have AS, regarding their USEs. The partici-
patory approach to the study allowed the realities of par-
ticipants interpersonal worlds to be explored in detail,
guided by the following main research questions:
1. How do unusual sensory experiences affect people
with Asperger syndrome in day to day functioning?
2. What strategies do people with Asperger syndrome
adopt in response to these experiences?
3. What do they think the long-term effects of these
experiences have been?
In relation to these questions therefore, it was seen that
USEs, in the form of heightened senses could cause a
variety of short and long-term effects. In the immediate
term, participants felt fear or anger, wanting to escape or
attack the source of sensory stress. A number of factors
moderated this relationship. After a person has escaped an
overwhelming situation, they then tended to avoid similar
situations in the future.
Other heightened senses could be fascinating, causing
pleasurable or calming sensory experiences and could lead
to certain abilities or skills. However these sensory fasci-
nations could also be distracting, especially when inter-
acting with other people, causing social difficulties.
Other people were often a source of difficulty, whether
causing sensory stress (e.g. by being noisy) or rejecting
participants due to their difficulties with their USEs.
However, if certain conditions were met, they could
become sources of support and coping strategies.
The strategies adopted in response to USEs were mostly
escape, attacking the source of sensory stress or avoidance
of many situations. However, some coping strategies
were found utilising the moderating factors: blocking
out other inputs, dampening the intensities, making their
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environments more predictable and ordered or using
calming strategies when out.
These experiences did not appear to have changed
throughout their lives, but with time some coping strategies
had been learnt to deal with them instead. In certain cases,
close neurotypicals had also gradually learnt to support the
person.
A major long-term effect of USEs was social isolation
and related depression. This isolation unfortunately
appeared to be absolute and difficult to return from. Some
self-acceptance and strength could result from these diffi-
culties however.
On the plus side, the USEs and associated sensory skills,
if found at school and if the person wasnt held back by
their difficulties socialising, could help lead to long-term
pursuits, such as employment or helping bring about
positive interactions with others and self-acceptance.
Comparison with Previous Studies Regarding USEs
Findings from previous studies about both USEs them-
selves and their relationships with associated problems in
people with ASDs are discussed here. Specifically the most
important and significant themes are discussed in relation
to the indications in the current study as to the nature of
these relationships.
The Nature and Importance of USEs
All participants in the study reported significant USEs. This
would be expected from quantitative studies showing a
very large majority of people with ASD have life-long
USEs (Tomchek and Dunn 2007). For qualitative studies,
similar sensory experiences were described by the partici-
pants in the Cesaroni and Garber (1991), Jones et al. (2003)
and Chamak et al. (2008)s studies. Similar to the current
studys participants, the participants in those studies also
outlined the confusing, stressful and painful nature of a
variety of sensory inputs and the enjoyable nature of others.
A desire to escape the stimuli was also described, as well as
unusual sensory abilities.
However, in contrast to a lot of previous research, the
USEs reported were mostly hyper-sensitivities. As dis-
cussed by Lane et al. (2010), studies have demonstrated
that children with ASD mostly exhibit hypo-sensitivities,
while Lane et al.s study demonstrated 3 clusters of sensory
processing dysfunction in children with ASD, with two of
these clusters having modulation difficulties (i.e. being
both hyper- and hypo-sensitivities) in different sensory
modalities. Foss-Feig et al. (2012) demonstrated correla-
tions in children with ASD and Learning Disability that the
severity of their tactile hypo-sensitivities correlated with
their core autistic symptoms, while hyper-sensitivities did
not. This difference between the current studys partici-
pants and previous research is therefore notable. The
authors suggest that this could be due to:
The small nature of the study created an atypicalsample
It may be easier to self-report hyper-sensitivities andalso easier for others to notice or ask about these rather
than hypo-sensitivities, thereby biasing the data
collected
The nature of USEs may change throughout the life-span as indicated by a meta-analysis by Ben-Sasson
et al. (2009) e.g. Liss et al. (2006), which suggest older
children with ASD demonstrate more seeking and over-
reactive behaviours. The authors are unaware of studies
conducted with adults with HFA/AS specifically,
measuring the prevalence of different forms of USEs.
However some studies have found the opposite, i.e.
younger children are more likely to be hypersensitive
(e.g. Baranek et al. 2007)
In this study, USEs appeared to have a central role in
their lives in a way that is not so for people without an
ASD. The relative importance of these experiences there-
fore partially point towards the conclusions made by
Chamak et al. (2008) who used content analysis to place
sensory sensitivities in a central position alongside emo-
tional dysregulation in causing the autistic triad of
impairments. Similarly, Baker et al. (2008) demonstrated
moderate correlations in children with ASD between the
severity of the USEs and their impairments in daily living
skills, showing how USEs can affect many aspects of a
persons life.
Emotional Functioning
Emotional dysregulation was highlighted as a central
theme of ASD by Chamak et al. (2008). Looking at other
studies, emotional dysregulation was an important theme
for school pupils with ASD in other qualitative studies such
as Humphrey and Lewis (2008) and Carrington and Gra-
ham (2001). In the current study, emotional dysregulation
occurred within an important part in a vicious cycle
(Sensory Avalanche) of stress and sensitivity, as high
levels of stress increased sensitivities, which caused higher
levels of stress and so on (as seen in Fig. 2). As Robert
stated I was always on tenterhooks. This links with
recent discussion by Green and Ben-Sasson (2010) about
how sensory over-responsivity and anxiety may link in
children with ASD.
Baker et al. (2008) found significant correlations
between poorer emotional functioning and USEs in
J Autism Dev Disord (2013) 43:891910 905
123
children with ASDs, specifically between tactile, visual and
movement sensitivities and levels of anxiety, but could not
state the direction or nature of this relationship. The results
in the current study therefore highlights how heightened
senses cause anxiety and also described the bi-directional
vicious cycle of the sensory sensitivities and levels of
anxiety.
Previous quantitative studies have highlighted dysfunc-
tional affect regulation in children with ASD. Bronsard
et al. (2010) showed children with ASD were more likely
to exhibit aggression in stressful situations for instance
while Konstantareas and Stewart (2006) showed the diffi-
culties children with ASD have with affect regulation.
Antisocial/Disruptive Behaviours
In Baker et al. (2008) study, significant correlations were
found between tactile and visual sensitivities on the one
hand and antisocial/disruptive behaviours on the other.
Again, Fig. 2 highlights how USEs could trigger off a
chain of events that cause difficulties in social situations.
Participants would often need to escape from situations
they found stressful due to their heightened senses (e.g.
crowded places) and would subsequently avoid them. They
could also attack sources of sensory stress. Both of these
behaviours therefore could be seen as antisocial or
disruptive.
Restricted and Repetitive Behaviours
In Gabriels et al. (2008)s study, a correlation was seen
between the severity of USEs and RRBs, while both Baker
et al. (2008) and Chen et al. (2009) found a link between
USEs and both self-absorbed behaviour and autistic
behaviours. Restricted behaviours include a need for
sameness, routine and order, while repetitive behaviours
can include repeated movements or limited activity inter-
ests. In Fig. 2, it can be seen that these behaviours occur at
many junctures. For instance the sameness, routine and
order was seen as a moderating factor of sensory stress and
a coping strategy that participants used to reduce the
impact of sensory stressors. Repetitive behaviours were a
way of calming oneself to cope with sensory stress (e.g.
Johns rocking) or as a result of their sensory fascinations
(e.g. Mikes sensitivity to and love of visual details). Fas-
cinations were linked to particular skills, which could then
lead to particular long-term pursuits, hobbies and jobs,
something also discussed by Baron-Cohen et al. (2009).
Therefore there were indications Heightened Senses had
a causal role in this point of the triad, albeit in a multitude
of ways. Further studies linking different aspects of USEs
and various RRBs may help strengthen these conclusions.
Comparison with Themes Associated with ASDs
Highlighted in Previous Studies
People with ASDs often have many other problems asso-
ciated with their ASD, which initially may appear unre-
lated to their USEs. Instead the current study gave
indications that relationships did exist.
Importance of Diagnosis of ASD
A study by Punshon et al. (2009) highlighted the life-
changing nature of the diagnosis of ASD in adults, as
participants were relieved to no longer feeling weird and
could understand the difficulties in their past and current
lives, before seeking help. A paper by the National Audit
Office (2009) even highlighted the economic impact fol-
lowing diagnosis of ASD in terms of money savings
through subsequently less use of Social and Mental Health
Services.
In a similar way, in the current study, awareness of
USEs (mostly from diagnosis of ASD) allowed participants
to feel less negative about themselves and their USEs, and
start working on coping strategies. The diagnosis also
helped other peoples understanding and build positive
relationships between participants and those around them.
Further studies following up adults diagnosed with ASD
may elicit other processes and/or strengthen the links found
in this study.
Isolation
Qualitative studies have highlighted the loneliness and
isolation that occurs along with having an ASD (Muller
et al. 2008; Jones and Meldal 2001; Punshon et al. 2009) as
have quantitative studies (Locke et al. 2010; White and
Roberson-Nay 2009), with the severity of isolation corre-
lating with severity of autistic symptoms (Jobe and Wil-
liams White 2007).
In Fig. 2, USEs set off a chain of events, including
escape from social situations and subsequent avoidance,
alongside rejection from other people, which ended with
long-term isolation. So for the current participants, their
USEs were a major contributing factor to their isolation.
Other People
An important factor highlighted in Humphrey and Lewis
(2008) study was the key role of other people in the school
life of someone with an ASD. In their study, good peer
relationships were key to a person feeling included at
school, while poor peer relationships caused a person to
feel very excluded. Similarly in the current study, other
people presented a dichotomy: on the one hand, supporting
906 J Autism Dev Disord (2013) 43:891910
123
participants with their USEs as well as providing some
social and self-acceptance for their problems. On the other,
poor relationships with people contributed to rejection,
avoidance and isolation.
Implications for Clinicians and Services
The issues raised in the current study allow some sugges-
tions to be made regarding how services and clinicians can
help the person with ASD.
Increasing Diagnosis
Awareness of USEs was a key part of multiple categories
within the results. It could start the development of coping
strategies and others being helpful (which then helped lead
on to self-acceptance). Clinicians can easily help accelerate
this process through increasing the rates of diagnosis of
ASD. A recent epidemiological study indicated the pro-
portion of adults in England with AS that are un-diagnosed
far outweighs the proportion that have been diagnosed
(Brugha et al. 2011). This may first require an increase in
the awareness of AS amongst professionals in the NHS as
well as the development of specialist AS services, consis-
tent with the UKs governments strategy Fulfilling and
Rewarding Lives (DoH 2010).
Awareness of USEs
Awareness of USEs also needs to increase amongst autism
professionals as stated by Ruth:
it appears to be indicative of asd, i know that it
doesnt come into the diagnostic criteria, but most
people with asd have some sensory issues.
Development of coping strategies that utilised the
moderating factors could be accelerated through education
by services for the person with ASD. Also the vital role that
positive interactions with other people had only occurred
following awareness of and communication about peoples
USEs, e.g. in helping them make their environment more
predictable and ordered.
Many treatments for USEs are available. However, at
the moment convincing evidence (in the form of consistent
positive results from randomised control trials) only exists
for the use of risperidone (McDougle et al. 2005; Miral
et al. 2008) and for massage (Escalona et al. 2001; Piravej
et al. 2009; Silva et al. 2009). Services may therefore like
to consider these treatments for people with ASDs and
USEs that impair their functioning. The RCTs above do not
theorise as to why they are effective, however the model
outlined in this study may explain the effect of these
treatments as risperidone and massage can both have
anxiolytic effects, which may prevent the sensory
avalanche.
Reducing Isolation
As seen in Fig. 2, a common result of USEs for the par-
ticipants was isolation, which could cause intense loneli-
ness and depression. Therefore support with this and
prevention of it is important. Adult support groups for
people with AS have been used to reduce isolation (Jantz
2011) and some of the participants in the current study
were able to use their interests and abilities to gain positive
interactions with others (e.g. through work or activity
groups). Encouragement could be given to join groups that
would not be in overwhelming environments and involved
areas the person was interested in e.g. rambling groups.
Work could be done to prevent the cycle of isolation
occurring. Early intervention in primary schools in the
form of treatment of USEs, support and social integration
may help the person not be excluded at this early stage,
possibly helping the person learn to cope with their USEs
without escaping them and assist social development.
Strengths and Limitations of Research, Including Areas
for Future Research
The study had a number of strengths and limitations that
should be borne in mind when making conclusions. It can
also give avenues for future research.
In this respect the study is the first study to interview
people confirmed to have an ASD explicitly on this
important, central and near-universal feature of ASD.
While Chamak et al. (2008) did interview five people on
the topic, the protocol used was unclear and the conclu-
sions also included a lot of data gathered from autobiog-
raphies written by particularly famous and high-
functioning people with ASD. To the authors knowledge,
no previous study had gone into such detail about the inter-
relating factors involved with USEs, regarding their effects
on the person (internal or social), and those around them as
well as their moderating factors and long-term effects.
Another strength of the study was the use of Instant
Messaging in the interview process. This gained positive
feedback from the majority of the participants, with some
preferring this method to the typical face-to-face interview.
From a personal point of view, it very much felt like
meeting the person on their terms and allowing them to feel
as comfortable as possible. This therefore seems like a very
appropriate option for researchers in the future.
However the sample size was only nine, meaning that
generalising to the population of people with AS is diffi-
cult. This also did not allow important factors such as age
of the participant or the time since diagnosis to be looked at
J Autism Dev Disord (2013) 43:891910 907
123
more fully e.g. in the creation of coping strategies or in
self-acceptance. The use of other qualitative methods of
analysis would also have allowed further credibility
checking of the data to occur (Elliott et al. 1999). The
credibility checking with participants did indicate strong
internal validity, alongside these caveats.
As discussed previously, the USEs presented by the
participants contrasted with previous research. Further
research may like to investigate participants experiences
of hypo-sensitivities and the long term effects on their
lives. The current study could have been improved by
assessing the participants USEs more formally and com-
prehensively with a detailed questionnaire of their USEs
e.g. the Sensory Profile (Dunn 1999).
The participants reported mostly sensory hyper-sensi-
tivities, which are thought to represent a significant sub-
population of people with AS (e.g. Kern et al. 2006 or 2 of
the 3 clusters of sensory processing disorders in AS found
in Lane et al. 2010). Therefore the findings here may only
relate to these people with AS and not the under-sensitive/
seeking cluster found in the Lane et al. study.
The model outlined here could be developed through the
use of quantitative studies and larger sample sizes to
expand on the links between categories highlighted by
demonstrating correlations. Longitudinal studies of people
with AS would also help demonstrate the temporal nature
of the processes discussed in this study e.g. discovery of
coping strategies or building of positive supportive rela-
tionships with others. It will be very important to further
investigate the processes occurring that create such isolated
lives for many of the participants in the study to better
inform interventions to prevent or ameliorate it.
As is part of the essential nature of ASDs, the partici-
pants had impaired theory of mind/empathising abilities
and often found it difficult to report on others thoughts and
feelings. While this was useful in itself, richer data
regarding other people could have been gained. Therefore
another study asking those around the person with AS
about the effects of USEs may be helpful in revealing the
others thoughts. This could be with people with negative
relationships with the person with AS, as well as those with
positive ones.
Conclusions
USEs, in the form of Heightened Senses, caused partic-
ipants to have a range of negative and positive experiences,
with subsequently powerful effects on their lives. Negative
experiences could induce fear and cause participants to
escape from stressful environments, which over time could
lead to avoidance of social situations, rejection from peers
and isolation. However some participants had found coping
strategies which utilised factors that moderated the effects
of Heightened Senses. Helpful people were few and posi-
tive interactions only developed following a long process,
requiring awareness, closeness and communication, to
become supportive. Positive USEs were pleasurable and
relaxing. They could lead to particular skills and abilities,
which if identified and nurtured led to hobbies and
occupations.
The study showed the need for services to help people
with AS and those around them in various problem areas,
such as increasing awareness of USEs, increasing rates of
diagnosis of AS and disseminating information on coping
strategies, in order to reduce the long-term negative effects
of USEs, especially isolation.
Acknowledgments Great thanks goes to the participants for theirhonesty and eloquence. Many thanks to Dr Krysia Canvin, Depart-
ment of Psychiatry, University of Oxford, for all her invaluable help
and infectious enthusiasm making the study a Grounded theory one.
Thanks also to Dr Myra Cooper, Oxford Institute of Clinical Psy-
chology, for her advice throughout the process. This paper is based on
research forming part of a doctorate in Clinical Psychology.
References
American Psychiatric Association. (1994). Diagnostic and statisticalmanual of mental disorders. Washington DC: American Psychi-atric Association.
Baker, A. E., Lane, A., Angley, M. T., & Young, R. L. (2008). The
relationship between sensory processing patterns and behav-
ioural responsiveness in autistic disorder: A pilot study. Journalof Autism and Developmental Disorders, 38(5), 867875.doi:10.1007/s10803-007-0459-0.
Baranek, G. T. (2002). Efficacy of sensory and motor interventions
for children with autism. Journal of Autism and DevelopmentalDisorders, 32(5), 397422. doi:10.1023/A:1020541906063.
Baranek, G. T., Boyd, B. A., Poe, M. D., David, F. J., & Watson, L. R.
(2007). Hyperresponsive sensory patterns in young children
with autism. American Journal on Mental Retardation, 112(4),233245. doi:10.1352/0895-8017(2007)112[233:HSPIYC]
2.0.CO;2.
Baranek, G. T., David, F. J., Poe, M. D., Stone, W. L., & Watson, L. R.
(2006). Sensory experiences questionnaire: Discriminating sensory
features in young children with autism, developmental delay, and
typical development. Journal of Child Psychiatry and Psychiatry,47, 591601. doi:10.1111/j.1469-7610.2005.01546.x.
Baron-Cohen, S., Ashwin, E., Ashwin, C., Tavassoli, T., &
Chakrabarti, B. (2009). Talent in Autism: Hyper-systemizing,
hyper-attention to detail and sensory hypersensitivity. Phil.Trans. R. Soc., 364, 13771383. doi:10.1098/rstb.2008.0337.
Baron-Cohen, S., Wheelwright, S., Robinson, J., & Woodbury-Smith,
M. (2005). The Adult Asperger Assessment (AAA): A diagnostic
method. Journal of Autism and Developmental Disorders, 35(6),807819.
Ben-Sasson, A., Hen, L., Fluss, R., Cermak, S. A., Engel-Yeger, B., &
Gal, E. (2009). A meta-analysis of sensory modulation symp-
toms in individuals with autism spectrum disorders. Journal ofAutism and Developmental Disorders, 39, 111. doi:10.1007/s10803-008-0593-3.
908 J Autism Dev Disord (2013) 43:891910
123
Bronsard, G., Botbol, M., & Tordjman, S. (2010). Aggression in low
functioning children and adolescents with autistic disorder. PLoS
ONE, 5(12). doi:10.1371/journal.pone.0014358.
Brown, N. B., & Dunn, W. (2010). Relationship between context and
sensory processing in children with autism. American Journal ofOccupational Therapy, 64, 474483. doi:10.5014/ajot.2010.09077.
Brugha, T. S., McManus, S., Bankart, J., Scott, F., Purdon, S., Smith, J.,
et al. (2011). Epidemiology of autism spectrum disorders in adults in
the community in England. Archives of General Psychiatry, 68(5),459465. doi:10.1001/archgenpsychiatry.2011.38.
Carrington, S., & Graham, L. (2001). Perceptions of school by two
teenage boys with Asperger syndrome and their mothers: A
quali