The sensory world of adults with Asperger Syndrome: A qualitative

study

Zsofia Maurer
W12888560

Module code: 1PSY628

Word count: 9715

Supervised by: Carol Pearson

This report is submitted in partial fulfilment of the requirements of the University of

Westminster for the award of BSc (Hons) Psychology.
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 Acknowledgements

This project is dedicated to Hans Asperger, the man who first recognized the uniqueness of certain
children and made it possible for many adults to gain clarity, understanding and acceptance of
themselves through the label of Asperger syndrome.

I would like to express how grateful I am for all those who helped and supported me throughout
the process of completing this project. I thank my supervisor, Carol Pearson who encouraged,
guided and kept me motivated along the way with her honest feedbacks. I also thank my partner
Renato and my best friend Angeliki for supporting me emotionally when at times I lost faith in
myself and my ability to finish this project. I also thank my parents, without them I would not be
the way I am, which largely influenced this study.

Additionally, I would like to thank all the wonderful people who were kind enough to take part in
this study and share their experiences, thoughts and feelings. I feel honored to get to know them.

2
 This project is entirely my own work.

Signed______________________ Date__________________

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Table of Contents

Abstract ....................................................................................................................................... 5
Introduction ................................................................................................................................. 5
i. Asperger syndrome .............................................................................................................. 5
ii. Sensory experiences on the autism spectrum ..................................................................... 5
iii. Theories of sensory processing on the autism spectrum .................................................... 7
iv. Rationale for adult Asperger population.............................................................................. 8
v. The use of the Internet ......................................................................................................... 9
vi. Research questions............................................................................................................... 9

Methods..................................................................................................................................... 10
i. Qualitative approach .......................................................................................................... 10
ii. Interviewees ....................................................................................................................... 10
iii. Planning .............................................................................................................................. 11
iv. Data collection .................................................................................................................... 11
v. Data analysis ....................................................................................................................... 12
vi. Ethical considerations ........................................................................................................ 12

Results and discussion ................................................................................................................ 13

i. Additional observations ................................................................................................... 35
ii. General implications ........................................................................................................ 35
iii. Strengths and weaknesses ............................................................................................... 36
iv. Conclusion ........................................................................................................................ 37

References ................................................................................................................................. 39
Appendices ................................................................................................................................ 45
i. Appendix I. ...................................................................................................................... 45
ii. Appendix II. ..................................................................................................................... 46
iii. Appendix III. .................................................................................................................... 48
iv. Appendix IV. .................................................................................................................... 53
v. Appendix V. ..................................................................................................................... 54

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Abstract
The current study aimed to explore the sensory world of five adults with Asperger syndrome by
using a qualitative approach. Three research questions guided this exploration addressing how
these individuals experience the world through their senses and how such experiences affect their
lives. The third question focused on the ways these individuals coped with their sensory
differences. Semi-structured interviews were conducted through internet chatting and were
analyzed employing Thematic Analysis. Four master themes were identified including increased
sensory sensitivities, variation of sensitivities, coping with sensory experiences and impact of
sensory differences. A number of subordinate themes were also identified within these categories.
The findings revealed that increased sensory sensitivities had a major impact on the interviewees`
lives including psychological and physical well-being. They resulted in different degrees of distress
or pleasure depending on various factors. Findings were discussed in the view of previous
literature. Implications for interventions and future research were also considered.

Introduction

“All things are heightened for me, so what a regular person would be tickled with pleasure over,
I`ll be totally ecstatic. Likewise, someone else`s small irritation will turn into a catastrophe for me,
like 100 nails screeching a blackboard (to use a commonly understood simile).” (O`Neill, 2000 In
Bogdashina, 2013, p.67)

Asperger syndrome
Autism spectrum conditions (ASC) is a group of neurodevelopmental conditions with the main
features of difficulties in communication and social interaction, restricted interests and highly
repetitive behaviour (American Psychiatric Association, 2013). Asperger syndrome (AS) describes
the milder end of the spectrum, which is characterised by the same features with the exception of
delay in language and cognitive development. Individuals with AS tend to have an average or
higher level of intelligence, but are faced with serious challenges in social interaction,
communication and emotional regulation.

Sensory experiences on the autism spectrum

Individuals on the autism spectrum can often perceive the world differently from others. There
have been numerous clinical as well as self-reports of idiosyncratic sensory perceptual experiences
5
on the autism spectrum. Peculiar sensory responses have been even reported in the earliest
accounts of autism (Asperger, 1944; Kanner, 1943). Many researchers suggested that the
difference in sensory processing is a core characteristic of ASC with a great impact on the daily
functioning of the person with autism (Ben-Sasson, Hen, Fluss, Cermak, Engel-Yeger & Gal, 2009).
These reports described both hypersensitivity and hyposensitivity to sensory stimuli in all sensory
modalities.

In the case of hypersensitivity the individual might receive too much sensory information resulting
in an extreme awareness of sounds, lights, smells and other stimuli. Consequently these
individuals can display `fight or flight` reactions to sensory inputs which are not perceived as
harmful or threatening by typically developing individuals (Schoen, Miller and Green, 2008). Such
sensitivity was linked to high levels of stress and anxiety with a negative impact on social
interactions and home routines (Kinnealey & Fuiek, 1999; Smith & Sharp, 2013). One study also
found associative connection between sensory over-responsivity and high levels of depression and
poorer quality of life of adults with autism (Kinnealey, Koenig & Smith, 2011). The most commonly
researched sensory systems are the auditory and tactile ones and it has been claimed that their
over-responsivity can interfere with the ability to carry out everyday activities (Royeen & Fortune,
1990). Further consequences of having sensory over-responsivity can include the strong aversion
of crowded places and noisy environments (Humphrey & Lewis, 2008), narrow diet due to the
dislike of certain textures and tastes, concentration problems (Carrington and Graham, 2001) and
the preference for being together with only one person at the same time or being alone (Müller,
Schuler & Yates, 2008). The majority of evidence for increased sensory sensitivity derived from
studies looking at children with ASC using the Sensory Profile Scale (Dunn, 1999) which is a
standardized self-report questionnaire (Schoen et al., 2008). Empirical investigation of sensory
processing in the adult population only took place in a recent study in which the researchers
measured each sensory domain separately using the Sensory Processing Scale. They found higher
levels of sensory over-responsivity in adults with ASC in all of the domains compared to the control
group (Tavassoli, Miller, Schoen, Nielsen & Baron-Cohen, 2013).

In the case of hyposensitivity individuals are under-responsive to certain sensory stimuli, which
might lead to reduced pain sensation for instance. There is some evidence for under-responsivity
to sensory stimuli from anecdotal accounts (Grandin, 1996) and empirical studies (Baranek, Boyd,
Poe, David, & Watson, 2007). Additionally, sensory perceptual differences could result in a range
of behaviours that include sensation seeking, fixation on stimuli, repetitive movements or sound
6
making and sensory tune-outs (Iarocci & McDonald, 2006). Moreover, individuals with AS
described difficulties with receiving, processing and integrating information from the senses and
with switching between sensory channels (Cesaroni & Garber, 1991). Further sensory experiences
were mentioned in personal accounts including synaesthesia (e.g., perceiving colours of words or
sounds of smells), sensory distortions (e.g., misjudging distances of objects), sensory overload,
sensory shut-down and difficulties processing input from more than one sensory channel
simultaneously (Attwood, 2006). It has also been noted that sensory seeking, hyper and
hyposensitivity might manifest in the same person in any of the sensory domains (Baranek, David,
Poe, Stone & Watson, 2006) and they also vary across different environments (Brown and Dunn,
2010).

Some would possibly argue that everyone has similar experiences once in a while when being
exhausted or under the influence of some substance, or that the majority has something that they
are not keen on in terms of food or harsh sounds. However, what really distinguishes these
sensory experiences is their permanence and intensity in the lives of individuals with autism
(Bogdashina, 2003). These idiosyncratic sensory experiences can play a major role in the everyday
life of many on the spectrum.

Theories of sensory processing on the autism spectrum

The topic of sensory processing disorder has been present in discussions, research and therapeutic
practice over the past 50 years since Ayres proposed her sensory integration theory (Ayres, 1964).
In her theory she extended the previously accepted five senses (olfactory, tactile, auditory,
gustatory and visual system) by identifying the proprioceptive and vestibular system.
Proprioception refers to body awareness or the sense of body position. The vestibular system can
be found in the inner ear and is responsible for one`s sense of balance. In the case of a
neurologically typical individual the processing of fragments of sensory information coming
through the seven sensory channels simultaneously is effortless and automatic. Hence, the brain`s
ability to integrate sensory stimuli provides the foundation for filtering out unwanted input,
prioritizing, organizing and understanding information. The theory of Ayres proposed that for the
majority of individuals with ASC the same process is likely to be different at a neurological level
that results in difficulties with integrating information from the seven sensory modalities (Ayres,
1964). There is some empirical evidence showing that sensory integration difficulties are more
prevalent in ASC than in other developmental conditions (Leekam, Nieto, Libby, Wing & Gould,
2007).

7
Throughout the years there have been a number of hypotheses besides sensory integration theory
aiming to explain the idiosyncratic sensory perceptual features of ASC. The theory of executive
function deficit suggested a shortfall in the coordination of the various information sources from
the seven sensory modalities (Zelazo & Muller, 2002). Whereas, the theory of Mottron and Burack
claimed that enhanced sensory perceptual processing is the potential underlying cause (Mottron,
Dawson, Soulieres, Hubert & Burack, 2006). Other researchers argued that the difficulty with
multisensory integration was the key to sensory differences in ASC (Iarocci & McDonald, 2006).

A more recent hypothesis unified the previous neurological findings as well as offered an
alternative explanation for autism as a whole. The intense world theory proposed that the hyper-
functioning of local neuronal pathways might be the underlying reason for various cognitive
features in autism including hyper-attention, hyper-emotionality, hyper-memory and hyper-
perception (Markram & Markram, 2010). There has been some supportive evidence for enhanced
processing from recent neurological findings. A study showed higher cortical activity in primary
sensory regions in interviewees with autism than in controls when exposed to sensory stimuli. The
same study found associations between sensory over-responsivity and activation of brain regions
responsible for emotion processing and regulation (Green, Rudie, Colich, Wood, Shirinyan,
Hernandez, Tottenham, Dapretto & Bookheimer, 2013).

Overall, neurological theories of sensory processing in autism vary in terms of the modality (higher
level cognition or sensory), the level of the problem (functional or structural) and also which
process is affected (neural connectivity, integration or binding); nevertheless they agree on the
view that idiosyncratic sensory processing is likely to be a core characteristic of autism (Iarocci &
McDonald, 2006).

Rationale for adult Asperger population

The literature mainly focused on the sensory differences of children with autism, and the findings
have been implemented both in therapeutic and educational settings (Baranek, Wakeford &
David, 2008). However, there has been a lack of research on the adult population (Crane, Goddard
& Pring, 2009; Tomchek and Dunn, 2007). More specifically the needs of higher functioning adults
on the autistic spectrum have been poorly represented in previous studies, although according to
biographical accounts sensory issues are a major aspect of the daily experience of adults with AS
(Hendricks & Wehnman, 2009). Hence, there is a growing need for research within the adult
population of higher functioning individuals in order to inform interventions and available support
better-tailored to their needs. Nevertheless this need has been acknowledged by some
8
researchers and recently there is an increase in the number of qualitative studies on the subjective
experiences and perceptions of adults with AS (Cesaroni & Garber, 1991; Chamak, Bonniau,
Jaunay, & Cohen, 2008; Jones, Quigney & Huws, 2003; Smith & Sharp, 2013) resulting in a better
understanding of the issues these individuals need to face (Griffith, Totsika, Nash, & Hastings,
2012).

One of the few qualitative studies on sensory experiences of adults with AS found that having
`heightened senses` could lead to pleasurable, calming or distressing sensory experiences with
both positive and negative impacts on certain areas of life (Smith & Sharp, 2013). Another study
analysed first-hand accounts of sensory experiences from personal web pages of individuals with
high-functioning autism. They identified the themes of turbulent and enjoyable sensory
experiences, coping mechanisms and awareness of being different (Jones et al., 2003). These
findings suggest that differences in sensory processing can have both advantages and hindering
effects on the lives of adults with AS.

The use of the Internet

The medium of the current study was chosen to be the Internet, which has been reported to be a
favourable way of communication for people with AS (Davidson, 2008). According to a self-report
of a woman with AS, interactions via the Internet are free from the often misinterpreted non-
verbal signs, the stress of having eye contact, the neurotypical (person without ASC) timing of
conversations and the demands of handling body language (Singer, 1999). Additionally,
interviewing via the Internet is likely to remove the discomfort caused by social-anxiety which is
highly prevalent in individuals with AS (Kuusikko, Pollock-Wurman, Jussila, Carter, Mattila, Ebeling
& Moilanen, 2008).

The aim of the current study was to explore the unique ways adults with AS experience the world
through their senses and how this impacts their lives from their own perspectives. The study also
aimed to raise awareness about the notion of `neurodiversity`, the idea that perceiving the world
in alternative ways from the majority is not necessarily pathological or dysfunctional (Singer,
1999). Asperger syndrome is another authentic way of being that should be accepted and not
cured.

Research questions
1. How do adults with AS experience the world through their senses?
2. How do sensory experiences affect the lives of adults with AS?

9
 3. How do adults with AS cope with their different sensory experiences?

Methods
Qualitative approach
The present study was set out to explore sensory experiences from the perspective of the
individual. The subjective nature of the data allowed for the use of a qualitative approach. The
aim of the research was to obtain rich in-depth data on the subjective experiences of the
interviewees. Semi-structured on-line chat interviews were conducted and were analysed using
the inductive, data-driven method of Thematic Analysis (Braun and Clarke, 2006). The influence of
the researcher`s subjectivity on the interpretation of the results was acknowledged and viewed as
a constructive process.

Interviewees
Interviewees were recruited from an on-line forum for professionals and individuals interested in
or affected by autism. The advert clarified the inclusion criteria, the aim of the study and
summarized the interviewing process involved. The use of on-line recruitment ensured that the
interviewees had access to the internet and were able to use a computer. Interviewees were
included upon having a formal diagnosis of Asperger syndrome and were required to be over 18
years. After the first response of the interviewees to the advert an information sheet and consent
form was sent out by e-mail (Appendix I.). After receiving the electronically singed consent form
arrangements for the on-line interview were made. The sample of the current study consisted of 2
male and 3 female interviewees (see Table 1.). Although one interviewee did not have a formal
diagnosis, she considered herself as being largely affected by AS and was going through the
diagnostic process at the time of the interviewing, thus she was included in the study. The
recruitment of further interviewees discontinued after considering the length and richness of the
data from the existing 5 interviews to be sufficient for analysis.

10
 Table 1. Demographic data of interviewees
Pseudonyms Age Nationality Age at diagnosis Comorbidities
Dyslexia
John 51 British 40
Dyscalculia
French and
Isabel 62 49 Unknown
British
Thomas 27 British 17 Dyslexia
Karen 46 U.S. citizen 46 Head injury
Past 3-4 years –
self-diagnosed
with AS
Maria 52 British Unknown
Formal
diagnosis in
progress

Planning
Before conducting the interviews an interview protocol was created using open-ended questions
covering the following areas: demographic details, negative sensory experiences, positive sensory
experiences and coping mechanisms (See Appendix II.). These were followed by an open ended
question on the extent to which the sensory experiences influenced their life. The protocol served
only as a guide, as the interviews were mainly interviewee-directed. Specific questions were used
as prompts (e.g. In what ways does it disturb you?, In what ways does it appeal to you?) in the
case of reduced responsiveness or to thicken areas of data.

Data collection
Five semi-structured interviews were conducted via online instant messaging between two secure
e-mail accounts. This way of collecting data has been reported to be a reliable method with many
advantages including the flexibility of scheduling, better access of special populations, low costs
and reduced risk of errors in transcription (Kazmer and Xie, 2008). Nonetheless, it also presented a
few shortcomings including higher chance of distraction of the interviewees, the invisibility of non-
verbal language and less control over the interviewing process (Smith & Sharp, 2013). One of the
interviewees could not use chat for technical reasons; hence the interview was conducted via e-
mailing. The interview started out by outlining the process and informing the interviewees about
their rights to withdraw at any time. In the following the interviewees were asked about their age,
11
nationality and age of their diagnosis. Next they were asked whether they were aware of any
sensations that caused discomfort to them and were prompted to give as many examples as they
could think of. Further prompts such as “How does that make you feel?” were used to explore
their subjective experiences regarding specific sensations. The same procedure was repeated for
positive sensory experiences in the second part of the interview. Each section finished with a
question on the overall impact of the experiences. In the final part the following question was
posed: “Do you do anything to reduce the discomfort of the sensations you mentioned? Could
you tell me about them?”. At the end the interviewees were briefed and permission was obtained
to contact them for the purpose of clarification of parts of the interview.

Data analysis
The interviews were copied from the instant messaging program into a document, where further
editions took place prior to the analysis including name alterations (for an example script see
Appendix III.). In the following Thematic Analysis (TA) (Braun and Clarke, 2006) has been
performed to analyse the interview scripts. The first stage involved multiple close readings of each
script and taking notes of initial observations of any patterns or topics. The second stage consisted
of reading the scripts one more time and applying line-by-line coding to produce initial codes at
both explicit and implicit levels. Memos were written during the entire process of analysis to note
any alternative codes, interpretations and to maintain reflexivity. Themes were refined and
validated in the view of the raw data set, and then a number of master themes were identified. In
accordance with the criteria set out by Elliott et al., transparency and trustworthiness was
enhanced by situating the sample, owning one`s own perspective and grounding in examples
(Elliott, Fischer, & Rennie, 1999).

Ethical considerations
The current study was approved by the psychology ethics committee of the University of
Westminster (Appendix IV.). All interviewees received an information sheet about the aims and
procedures of the study, confidentiality and their rights to withdraw at any time with no reasons
provided. All interviewees gave their consent electronically. Details that could potentially identify
interviewees have been altered and their names have been replaced with pseudonyms for the
purpose of confidentiality and to preserve anonymity. Considering the sensitive topic of the
research a number of questions might have elicited minor level of stress in the interviewees
although every step has been taken to prevent, reduce or balance out such outcomes over the
course of the interviews.

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Results and discussion

The current study explored the subjective sensory world of five individuals with AS. The following
research questions guided the process:

1. How do adults with AS experience the world through their senses?

2. How do sensory experiences affect the lives of adults with AS?
3. How do adults with AS cope with their different sensory experiences?

After an in-depth analysis of the interview scripts four overarching themes were identified. These
were increased sensory sensitivities, variation of sensitivities, coping with sensory experiences and
impact of sensory differences. See Table 2. for a summary of the master and sub-themes.

Table 2. List of master and sub-themes

Master themes Sub-themes
1. Increased sensory sensitivities 1a. Auditory
1b. Visual
1c. Tactile
1d. Olfactory
1e. Temperature
1f. Food aversions
1g. Vestibular and proprioceptive
2. Variation of sensitivities 2a. Stimulus factors
2b. Internal state
3. Coping with sensory experiences 3a. Personal bubble
3b. Support from others
3c. Preparation and prevention
3d. Coping on the spot
3e. Enjoyable sensory stimulation
4. Impact of sensory differences 4a. Psychological well-being
4b. Physical well-being

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Increased sensory sensitivities (ISS)

In line with the previous body of research numerous ISS were found in the present study (Tavassoli
et al., 2013). This means that everyday sensations were perceived as highly intense or amplified.
All of the interviewees reported ISS in at least three sensory domains. More specifically the
auditory and visual domains were common among all interviewees, and the olfactory domain
appeared in the cases of four interviewees. It emerged from the data that being highly sensitive to
a certain sensory input can have both positive and negative aspects. While some of the
interviewees described their sensitivity as being highly stressful, others perceived them as a `gift`
or ability that other people do not have. Data were grouped to create sub-themes in order to
report sensory experiences from each sensory domain. The seven sub-themes were: Auditory,
Visual, Olfactory, Tactile, Temperature, Food aversions and Vestibular and Proprioception.

Auditory

The auditory domain has been one of the most commonly researched ones in over-
responsivity studies (Royeen & Fortune, 1990). Isabel and Karen reported over-sensitive
hearing leading to great distress.

“…When there is too much sound I may hold my head in my hands or rock, hitting my head
against a wall. Excessive noise makes me feel nauseous.” (Isabel, 4, 41, p.2)

“Hearing is the worst. There are certain sounds that are torturous for me. I do worst with
muffled sounds like people talking in muffled voices in another room, also things like
tapping of pencils, breathing, people eating/breathing. Ticking clocks!!! “ (Karen, 3, 21,
p.1)

However, John perceived his sound sensitivity as something with both advantages and
disadvantages:

“I have extraordinary hearing……….I can hear above the normal range and have twice been
tested in acoustic labs to verify…………I hate loud noise though in general, which is, of
course a bit of a social handicap. On the other side I hear detail in both music and nature
beyond others which can be a wonderful gift. Plus, good hearing is a very useful early
warning thing.” (John, 2, 19, 23, p.1)

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The positive aspects of increased auditory sensitivity has been found in previous studies
reporting superior pitch recognition or perception of frequencies of sounds that are not
detectable by others (Bonnel et al., 2003).

Visual

Visual over-responsivity was one of the most challenging ones due to the unavoidable
nature of light and was reported by all interviewees. They gave accounts of sensitivity to
bright lights, glare or specific colours leading to unpleasant or even highly stressful
experiences. Karen described her increased sensitivity to light that caused her strong
discomfort both in-and outdoors:

“…It just feels like it "hurts" but there isn't pain, it's like my body is rejecting the light. I
have to close the shades or wear sunglasses. It can also be uncomfortable with indoor
lights that are too bright.” (Karen, 3, 31, p.1)

Whereas for Isabel the colours red and yellow in specific were the sources of her sensory
stress:

“Red and yellow colours are a problem for me and so places like bowling halls and
children’s play centres are difficult. In addition many places use lighting which give off
yellow or red rays and I get very tired as well as bad tempered. “(Isabel, 4, 47, p.2)

Tactile

Increased tactile sensitivity has been described by a number of interviewees both in

regards to passive and active touch of certain textures. They also noted difficulties with
other people`s touch, that has been labelled as `tactile defensiveness` in the literature
(Ayres, 1964). Most of them found their sensitivity to touch very disturbing while one
interviewee reported it as something positive. Texture aversions limited the range of
clothes the interviewees could wear or objects they could come into contact with. Maria
gave an account of her aversion of specific textures of fabric:

“…I hate nylon. I really don't know why in particular I prefer velvet or corduroy. I hate the
seams of socks on my toes! I'd rather wear them inside out so they feel smooth…” (Maria, 1,
129, p.5)

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For some touch can even be tremendously painful. Isabel described her increased touch
sensitivity as one of her most dominant sensory difficulties:

“…Touching certain fabrics is very difficult e.g. waxed jackets, satin, wool and brushed
nylon………….. If I touch the offensive fabrics I snatch my hand away as if I have been burnt, I
shake it and try to wipe it on something more tolerable or wash it. The sensation fills me
with horror!” (Isabel, 4, 28, 31, p.1)

Whereas, John perceived his tactile sensitivity as a `gift` that can come handy in certain
tasks:

“…to place a bit more emphasis on how sensitive to touch and texture I am, very
tactile.………………very useful when checking the quality of paint spraying, I'd close my eyes
and be able to feel any filler, bubble, anything.” (John, 2, 152, 158, p.5)

A different category of tactile sensitivity is the touch of other people. A number of

interviewees reported that being touched by strangers felt highly uncomfortable. This was
also one of the reasons the interviewees avoided crowds. John described himself as not a
`touchy-feely` person:

“…large groups of tightly packed people do make me uncomfortable. I'm not a `press-the-
flesh, touchy/feely person`…” (John, 2, 77, p.3)

Heightened tactile sensitivity has been reported widely in previous autobiographical

accounts of adults with AS (Grandin, 1996; Gerland, 1997; Willey, 1999). There has been
some evidence from quantitative studies as well. One study found that adults with AS had
a lower threshold to vibrotactile stimulation and found tactile stimulation more intense
and tickly than those in the control group (Blakemore, Tavassoli, Calò, Thomas, Catmur,
Frith, & Haggard, 2006). In a more recent study higher level of over-responsivity was found
including the tactile domain in adults with ASC based on a self-report sensory processing
scale (Tavassoli et al., 2013). The present findings were consistent with these showing
strong dislike of certain textures and preference of specific materials. It was clear that such
sensitivity can interfere with everyday activities involving touch to a large degree. The data
also revealed that having a sensitive touch can become a useful asset in certain tasks that
helped the interviewees to perceive their sensory differences in a positive light. Individuals
with AS have difficulties with social situations and can be largely affected by social-anxiety

16
(Attwood, 2006). Hence, regarding the touch of other people and the dislike of crowds as a
result it might be safe to assume that the aversion has a social aspect to it rather than
being a purely sensory sensitivity.

Olfactory

A number of interviewees reported their sensitivity to smells being highly disturbing as well
as enjoyable or useful in certain circumstances. Isabel described her increased sensitivity to
smells as something with both benefits and drawbacks:

“I am very sensitive to smells. For instance I can smell melon from several rooms away and
feel physically sick…………The smell of rubber is also revolting to me………… The plus side is
that if I am in a garden of flowers, herbs and so on, the fragrance lasts for me.” (Isabel, 4,
21, 23, 26, p.1)

John perceived his heightened sense of smell as an ability that others did not have. After
stating that he had an `above normal` sense of smell John gave an example of how this
`gift` prevented potential accidents:

“I saved a few places by smelling gas leaks before anyone else present. I smelled, they
couldn't I said "look call the gas board" and hey, they found gas leaks, once a major one in
the street when I was a kid.” (John, 2, 43, p2)

Increased olfactory sensitivity has appeared previously in several personal accounts and
qualitative studies (e.g. Willey, 1999; Jones et al., 2003). However, there is very limited
quantitative research on this area and the existing ones found under-responsivity to smells
rather than over-responsivity (Suzuki, Critchley, Rowe, Howlin, & Murphy, 2003). This is not
to suggest that either under- or over-responsivity must be more prevalent in AS
considering the diversity of sensory processing differences. In support of this, variation of
under- and over-responsivity in the same individual was also reported in previous research
(Schoen et al., 2008).

Temperature

Some of the interviewees reported an increased sensitivity to either hot or cold

temperatures, which was in line with previous accounts of individuals with AS regarding
idiosyncratic temperature regulation (Attwood, 2006). Some individuals with AS seem to

17
have their own internal thermostat that causes them to feel cold or hot when others would
feel the opposite way. For instance, John described a lower tolerance of cold and higher
tolerance of heat compared to other people:

“…I feel cold when others feel ok but in 30C+ they'll be wilting and I won't even sweat…”
(John, 2, 61, p.2)

In contrast to John, Thomas had the opposite experience with temperatures being more
sensitive to heat and more tolerant of cold:

“…poor temperature regulation with heat-humidity being intolerable while chilling cold is
better regulated…” (Thomas, 5, 28, p.1)

Food aversions

As previous studies showed the diet of some people on the autistic spectrum can become
very restricted due to their difficulties with specific textures of food (Carrington and
Graham, 2001). In line with these reports, a number of interviewees gave account of their
strong dislike of food textures. The type of textures that interviewees found unpleasant
varied greatly from person to person. For instance, Isabel would mainly avoid rubbery
textures in food:

“…there are foods that I cannot stand because of their texture. Crumpets, mushrooms and
tofu are at the top of my `Avoid` list because to me they are like eating rubber and are
revolting. I shudder to think of them…” (Isabel, 4, 43, p.2)

Whereas, Maria had difficulties with slimy and bitty textures:

“I can't STAND mushrooms! Not the taste as such but the sensation of them! Reminds me of
slugs!..........I don't like the bitty-ness of coconut…” (Maria, 1, 131, 134, p.5)

Vestibular and Proprioception

Gravitational insecurity has been long identified as a sign of over-responsive vestibular

system in children with ASC (Ayres, 1980). Proprioception refers to the body awareness
system of the joints and muscles that informs the individual of their position in space and
about the movement of their limbs. Individuals with AS can present several difficulties
when these senses are over or under-responsive including clumsiness, disorientation or

18
 motion sickness (Siaperas, Ring, McAllister, Henderson, Barnett, Watson, & Holland, 2012).
Isabel`s problem with her balance and coordination might be due to one of these senses
being highly sensitive:

“My balance is awful and I fall over a lot. When I walk I tend to look at the ground in front
of me as I need to know where my feet are, and it’s often when I’m trying to look around
that I fall. When walking down a corridor I often zigzag down and hit the walls as I do
so.” (Isabel, 4, 52, p.2)

Overall, all of the interviewees described increased sensory sensitivities (ISS) in a number of
sensory domains. In relation to the first research question a detailed image of how these
individuals experience the world through their senses emerged. This image showed an intense and
amplified experience that could cause high levels of distress on a daily basis. However, it also
became apparent that some of the sensitivities that cause stress in one context can also serve a
beneficial role in other settings including the enjoyment of the prolonged smell of flowers or the
ability to hear and appreciate details in music that others cannot. Other types of positive sensory
experiences were also described by the interviewees that will be considered under the theme of
`coping with sensory experiences`. In comparison with previous research, the experiences of the
interviewees were in line with those outlined in other qualitative studies. Participants of these
other studies also described idiosyncratic sensory sensitivities as sources of anxiety, distress and
fear as well as sources of enjoyment and special skills (Cesaroni & Garber, 1991; Chamak et al.,
2008; Jones et al., 2003; Smith & Sharp, 2013).

The present accounts mainly described ISS in contrast to some of the previous literature in which
reduced or hypo-sensitivities were reported (Iarocci & McDonald, 2006). The discrepancy in
previous findings and the current reports could be due to several factors. First of all, the small
sample size might have only been representative of individuals with ISS and not those with hypo-
sensitivities. Secondly, it might be easier to notice and describe ISS than hypo-sensitivities, thus
leading to a biased data. Moreover, it is possible that due to the time limits of the interviews the
interviewees decided to prioritize ISS simply because they were perceived as more significant or
interesting than their reduced sensitivities. Therefore it would be a valuable aim for future
research to explore hypo-sensitivities or other sensory experiences that are different from ISS such
as sensory distortions or synaesthesia in order to obtain a better understanding of the world of AS.

19
Variation of sensory sensitivities

One of the common attributes of the interviewees` sensory experiences was that they were not
stable or consistent in the way they were experienced. Interviewees described variation within
sensory modalities as well as across situations and time. They also gave accounts of different
factors that either escalated or moderated the level of sensitivity to sensory input. These factors
were grouped to create two sub-themes: Stimulus factors and internal factors.

Stimulus factors

A number of interviewees reported features inherent to stimuli that caused variation in the
level of tolerance of them. This variation depended on the intensity, amount or the nature of
the specific input. Karen identified the different types of noises and the distinctive reactions
she had in response to them. These reactions might correspond to either fight, flight or fright
responses of the central nervous system:

“I think there are different categories of noises and the way they disturb me. The more
"irritating" where I get sort of manic like with ticking clocks, but then overwhelming noises like
in a crowd where I feel overwhelmed and like I need to leave, and muffled noises where I feel
like Im going crazy and want to kill someone.” (Karen, 3, 51, p.2)

In contrast to Karen, Thomas did not relate his responses to the specific nature of the sounds.
He claimed that his auditory sensitivity depended on other stimulus related factors:

“For me it is not so much the sounds themselves but rather their intensity, how many are heard
at once…” (Thomas, 5, 32, p.1)

Internal factors

The interviewees gave accounts of how their sensitivity to sensory input varied depending on
internal factors including age, affective state and perception of others.

Age

Some interviewees noted changes in their sensitivities over the years either in a positive or
negative direction. Karen stated that her sensitivity to sounds became more increased with her
age:

“…As I've gotten older also startle with loud sudden noises.” (Karen, 3, 23, p.1)
20
Whereas Isabel explained that sensory issues are not as central to her everyday life as they
used to be when she was younger. She attributed this positive change to her ability to learn to
cope with them over the years:

“…they probably were when I was younger, but nowadays I don’t tend to think about them very
much as I have made myself cope with them…” (Isabel, 4, 108, p.4)

Affective state

Changes in the degree of sensitivity were also related to being stressed or anxious making the
interviewees more sensitive to sensory stimuli. For instance, Thomas reported that his
sensitivity to sounds greatly increased when he was in an anxious state:

“…Yes more so when stressed or anxious, with sound perception increasing to more like twice
the normal level…” (Thomas, 5, 25, p.1)

He also described a direct relationship between his sensitivity to background noises and his
affective state:

“When able to better regulate prefrontal cortex stress, anxiety and paranoia socialising is
manageable being able to hear up to 4 conversations at a time with ease and desensitising to
background noises, in contrast poor emotional regulation can make me more easily distracted
by background noises…” (Thomas, 5, 38, p.1)

The present findings suggested that anxiety can have an accumulative effect by making the
person more sensitive to sensory input, resulting in more stress and anxiety and leading to
more increase in sensitivity. This had been identified as the `vicious cycle` in a previous
qualitative study on sensory experiences in AS (Smith & Sharp, 2013). One possible explanation
can be the link between emotion and attention regulation. Individuals with AS tend to have
challenges in both sensory and social areas therefore when they have to manage the social
challenges of a situation there is little cognitive capacity left for controlling their ISS leading to
a greater distractibility by the sensory features of the environment. Hence, higher levels of
anxiety will potentially result in a decreased ability to filter out unwanted stimuli (e.g.
background noises) and further difficulties in attending to a conversation. In support of this
hypothesis some studies linked anxiety to increased auditory sensitivity (Green & Ben-Sasson,
2010; Pfeiffer, Kinnealey, Reed & Herzberg, 2005) and found association between emotion

21
 regulation and sensory perceptual processing (Green et al., 2013). Thus, the accounts of the
interviewees were consistent with previous qualitative and neurological findings.

Perception of others

Some of the interviewees also revealed that the way they perceived other people was a
moderating or escalating factor in their sensitivities. John reported how his tactile
defensiveness depended on the perceived warmth of members of a specific culture. After
being asked how he felt about others` touch he answered:

“Not keen in the main...yet with Spanish people, I have spent a lot of time in Spain, it's FAR less
pronounced. I wonder if it could be a psychological thing, the English I find are a cold people
and that repels me, the Spanish are not” (John, 2, 81, p.3)

The findings showed that the interviewees experienced variation in their sensory sensitivities
depending on a number of internal and stimulus related factors. This provided further answers in
relation to the first research question regarding the ways these individuals experience the world
through their senses. Having increased sensory sensitivities was not completely stable or
consistent for the majority of the interviewees but rather dynamic and context-dependent.

The findings were consistent with previous studies where the fluctuating nature of sensory
responsiveness in individuals with ASC was found (Schoen et al., 2008). Brown and Dunn reported
in their research a variation of sensory over-responsivity between environments (Brown & Dunn,
2010) which was also supported by the current statements of the interviewees. In the light of this
information it seems misleading to establish a fixed category of either `hyper- or hypo-sensitive`
sensory profile based on a `snap-shot` of children or adults with ASC. The use of more
comprehensive, flexible and detailed measurements and observations at multiple occasions is
likely to reflect the variability of sensitivities and the factors responsible for such changes more
accurately. For instance the use of the recently developed Sensory Processing Scale (Schoen et al.,
2008) that allows the separate measurement of each sensory domain is recommended in future
research and interventions in combination with self-reports of moderating and escalating factors.
This way interventions and coping strategies could be better tailored to the dynamics of sensory
sensitivities by identifying and reducing factors that potentially escalate sensory stress in each
sensory modality. Future research is also suggested on the specific internal and external factors
that either mediate or escalate sensory sensitivities in order to inform clinicians about the wide

22
range of factors they need to look for when designing personalized interventions or support
programs for individuals with ASC.

Coping with sensory experiences

As considered above, having increased sensory sensitivities resulted in high levels of stress or
anxiety on a regular basis in the lives of the interviewees. In order to manage their lives with
sensory differences they developed ways of reducing and coping with sensory stress. Some
strategies were common among the interviewees whilst others were more idiosyncratic.

Personal bubble

Having a personal bubble seemed to be a common experience across the majority of the
interviewees. It represented either the home when avoiding stressful situations, or the
inner world of the individual when mentally escaping. It emerged from the data that this
personal bubble could provide a sense of security and back-up. However, it also
represented the individual’s comfort zone, which can interfere with progress and
development if it is never left for new challenges. Some interviewees were very aware of
this zone both as a `hiding place` and something that needs to be broadened. Overall,
creating and using the personal bubble was clearly a way to cope with the challenges of AS
including sensory stress. The responses were grouped into three sub-themes: avoidance,
escape and broadening the comfort zone.

Avoidance

One of the ways the interviewees` personal bubble was created and maintained was
through the avoidance of the outside world or specific situations that were perceived
threatening to the senses. The interviewees seemed to make a choice to stay away from
certain places in order to reduce the level of sensory stress in their lives. They gave
accounts of a rather reserved lifestyle that made them feel safe and protected. The
examples of John and Maria demonstrated this well:

“Principally though I try to avoid situations which are likely to be stressful-leading to a

rather hermetic lifestyle…” (John, 2, 114, p.4)

“I don't go anywhere much. Only work and home. So I don't tend to have to face too much
unpleasantness…” (Maria, 1, 255, p.9)

23
Escape

In order to cope with sensory stress or sensory overload at times the interviewees felt like
simply escaping from the source of stress either mentally or physically.

Mental escape

Mentally escaping to their personal bubble was described by a number of interviewees. It

was either achieved by substances or by shutting the outside world out. John labelled his
mental escape as `leaving` after being asked about his ways to cope with sensory stress:

“leaving, I am not a drinker, I do use xanax when needed and consider it the best AS
supplement out-aside from harder drugs…” (John, 2, 110, p.4)

Maria preferred to shut the outside world out when being in town due to her ISS to sounds
and dislike of crowds:

“…I wear ear phones to shut things out when I have no choice but to be in town. Often I
don't even have the music on - I feel like I'm in my own works and pretend the real World
isn't there” (Maria, 1, 257, p.9)

Physical escape

Once it was too late and the interviewees felt distressed or agitated from sensory
overstimulation they felt the need to physically escape and re-enter their safety zone.
Isabel described bowling halls and children’s play centres as the following:

“…They are very frightening places to be in and I prefer to be out of the situation
immediately…” (Isabel, 4, 49, p.2)

Karen stated her need to escape in order to cope with her auditory sensitivity:

“…overwhelming noises like in a crowd where I feel overwhelmed and like I need to leave…”
(Karen, 3, 52, p.2)

Broadening the comfort zone

Leaving the personal bubble in a gradual manner can potentially result in some level of
desensitization. Two of the interviewees reported their conscious effort to step out of their
comfort zones in order to adapt to sensory stress over time. Thomas gave an example of
24
how he plans in advance in order to control the level of exposure to stress evoking
environments:

“…graded exposures to desensitise over time………..A clothes Shopping Centre for example; I
would seek to be clear exactly what I actually want and if I may wish to frequent a coffee
shop in advance, deciding if I may want anything another time or picking less busy hours.”
(Thomas, 5, 53, 61, p.2)

Isabel described how she adapted to sensory issues over the years by simply pushing
herself to leave her comfort zone:

“…I have made myself cope with them, even if it just consists of saying to myself “**** it –
this needs to be done, so just do it anyway”...” (Isabel, 4, 109, p.4)

She also reflected on her recent experience where she successfully stepped out of her
comfort zone:

“…This week I went for the first time to an ice hockey match and it was a good example of
all the senses being violently assaulted. With support from the people I was with and a pair
of earplugs, I managed it and will go again…” (Isabel, 4, 111, p.4)

Support from others

Some interviewees reported that one of the ways to cope with sensory stress was to use
the support of other people. For Thomas it was less of an emotional support and more of a
reasonable strategy for a `reality check`:

“…if necessary seeking company to test realities of 'unbearable environments' “(Thomas, 5,

53, p.2)

Support for Isabel meant both an emotional reassurance and a sensory strategy of deep
pressure touch to calm down. After she explained her need for weighted blankets, she
continued:

“…when my husband is around a strong hug is what I prefer. It simply tells me that I am not
on my own and it is very pleasurable.” (Isabel, 4, 96, p.3)

Support did not have to be an action for some interviewees. For Maria a positive attitude
implying tolerance and patience was enough:
25
“I think the biggest thing anyone can do to alleviate stress we feel is to be PATIENT!!...”
(Maria, 1, 329, p.12)

Preparation and prevention

A number of interviewees reported ways to cope with sensory stress that required a pro-
active role from their side in order to prevent sensory stress. The techniques included the
alteration of the environment, the learning of a new skill or the use of certain tools. Isabel
adjusted her physical environment to prevent distress from touching unpleasant surfaces:

“…For example in my car the roof is covered in a brushed fabric and I have had to touch it to
pull down the sun visor. I have now place metal clips on the visor so that I don’t have to
touch the roof…“ (Isabel, 4, 30, p.1)

Whereas Thomas decided to learn lip reading in order to prepare for social situations
where he gets distracted by background noises:

“…finding self-learning basic lip reading was necessary to filter out conflicting messages
heard from multiple conversations…” (Thomas, 5, 42, p.2)

The majority of the interviewees used certain tools to prevent sensory stress including
headphones, earplugs, eye-masks or hand cream. The following examples demonstrated
well the range of coping tools:

“…I use earplugs and a flying-kit style eyemask…” (John, 2, 113, p.4)

“…At night I use a lot of night cream so that I can touch the sheets…” (Isabel, 4, 34, p.2)

Coping on the spot

Sometimes having the safety zone, the support of other people or taking preventive steps
were not enough to alleviate sensory stress. In many cases it was unavoidable for the
interviewees. Most of them described their efforts to reduce sensory stress when they
were already becoming agitated or the sensory overload has already happened. These
scenarios required coping strategies that could reset the nervous system from a `fight or
flight` mode to a calm state. Both Karen and Thomas used breathing techniques to calm
their heart rates down:

“..I try to stay calm and calm my heart rate etc.” (Karen, 3, 59, p.2)
26
“…need to regulate breathing more to minimise higher levels of stress and anxiety.”
(Thomas, 5, 46, p.2)

Other techniques involved repetitive movements or sounds. These have been commonly
reported among children with ASC and it is considered to be a self-regulatory behaviour
that helps to bring high arousal levels back to the optimum (Williams & Shellenberger,
2002). It seems from the present accounts that these coping strategies might not be
restricted to childhood. For instance, Maria explained her intense need for making sounds
to release some of her stress at work:

“…I am ALWAYS singing or whistling or humming! But especially at work. I think most of the
time I sing or whistle because it helps me feel secure somehow……. Especially when I feel
panic rising I can feel myself going 'AAAAAARRRGGH!' inside but it will come out as 'la la
la'…” (Maria, 1, 105, 115, p.4)

Whereas Isabel engaged in repetitive rocking to calm herself down, she also tried to
redirect her attention from the source of stress through focusing on a new source of
discomfort that she was in control of:

“…When there is too much sound I may hold my head in my hands or rock, hitting my head
against a wall…” (Isabel, 4, 41, p.2)

Some of the other coping strategies used on the spot were also sources of pleasure on
their own in non-stressful situations. Therefore they will be discussed separately under the
following theme.

Enjoyable sensory stimulation

The majority of the interviewees reported that certain sensory stimuli were relaxing or
even pleasurable including smells sounds, visual and tactile input. The interviewees
perceived these experiences as powerful and highly important in their lives. They gave
accounts of seeking out specific sensory stimulations in order to reduce sensory stress,
distract their minds, relax or find pleasure. It might be plausible to assume that when these
are sought out there are two stages in their functioning. In theory, the purpose of the first
stage is to reduce and cope with sensory stress or overload. Once the individuals regained
their optimal level of inner states they enter the second stage where the same stimulation
serves a role of pleasure without the need to reduce stress. Individuals with AS can be
27
completely drawn into this state that has also been mentioned as sensory `zone-out`
(Bogdashina, 2003). A number of subordinate themes were identified as follows:
repetition, touch by hand and deep touch pressure.

Repetition

A number of interviewees described the calming effects of being exposed to the same
stimulation over and over again. The familiarity and repetition could almost act like
chanting a mantra resulting in a peaceful and relaxed state. Some interviewees found
repetitive visual or auditory stimuli to be both calming and pleasurable. For instance, John
described his enjoyment of watching the movements of others` hands:

“…watching people using their hands-things like pottery-making or weaving, the repetition
and fluidity of movement I find hugely calming…” (John, 2, 97, p.4)

Isabel used special sensory objects that produced slow, fluid movements to unwind; she
also described the pleasure she obtained from looking at them:

“…lava lamps and bubble tubes. I can sit and watch the movements of the wax or the
bubbles for long periods of time and they have the effect of relaxing me, and they give me
pleasure in a simple way as I am not making any demands of myself.” (Isabel, 4, 99, p.3)

One of the interviewees gave an example of an even more intense sensory `zone-out`
experience. John has been fascinated by watching repetitive motion since his childhood.
He could spend a great amount of time with this activity:

“…as a kid I would spin a marble round a bowl FOR HOURS and I still love the Newton's
cradle…” (John, 2, 102, p.4)

Watching the same TV program or listening to the same music also had a calming effect on
the interviewees. Familiarity provided a sense of security for the interviewees in a world
that is full of unpredictable sensory threats. As an example, John enjoyed watching the
same program over and over again:

“…Certain familiar TV programmes can induce tranquillity, even, sometimes especially if I've
seen them many times before…” (John, 2, 98, p.4)

28
Touch by hand

The interviewees gave account of how they found the touch of certain objects or textures
calming and pleasurable. Although touch was primarily sought out in order to cope with
sensory distress it also provided enjoyment at the same time. Isabel used a specific `fiddle
toy` when her stress started to escalate in order to redirect her attention onto something
other than the stressors.

“…I do like the feel of certain objects as they can steady me when I start to become
agitated. For instance I use some plastic faceted balls which I keep turning over in my
hand, like a “fiddle toy”. I like the feeling of them in my hand and they simply give me
something to focus on both texturally and visually when there is mayhem going on around
me…” (Isabel, 4, 91, p.3)

Thomas also found touching certain objects both relaxing and enjoyable:

“Light or deep hand touch can be very calming, soothing and on rare occasion pleasurable
can be derived from holding certain objects such as sweet cake like foods, cooking utensils
and a warm coffee mug…” (Thomas, 5, 71, p.2)

Deep touch pressure

Deep touch pressure has been widely used as part of sensory integration therapy for
children with ASC and it refers to the application of firm pressure by hands, weighted
blankets or vests (Case-Smith, Weaver, & Fristad, 2014). The interviewees discovered the
calming effects of deep touch pressure and applied it when feeling stressed. Isabel found
weighted blankets to be effective for her:

“…Weighted blankets are useful to me when I feel vulnerable…” (Isabel, 4, 96, p.3)

Karen used multiple layers of blankets to achieve the calming sensation:

“…Sometimes just lay in my bed with lots of blankets…” (Karen, 3, 114, p.3)

As a previous review suggested sensory differences could lead to a range of pleasurable

and self-regulatory behaviours including repetitive movements, making sounds, sensory
`zone-out` or `fixation` on stimuli (Iarocci & McDonald, 2006). The current accounts were in
line with this showing how such `fixations` can have a positive impact on the overall

29
 experience of the individual in terms of balancing out the stresses of the outside world. In
addition, the stress reducing effect of sensory objects (e.g. lava lamps, fiddle toys, stress
balls), deep touch pressure (e.g. weighted blankets), dim lights or aromatherapy has been
widely acknowledged and applied by occupational therapists (Lytle & Todd, 2009). There
has also been a study showing significant improvement in the challenging behaviour and
the quality of life of an adult with ASC as a result of systematic application of deep touch
pressure (Blairs, Slater, & Hare, 2007). Thus, the findings regarding sensory strategies can
have implications for both therapy and interventions for any ages on the autism spectrum.

The current findings showed several ways the interviewees coped with their sensory experiences
providing answer to the third research question. Their personal bubble played a key role when
avoiding or escaping sensory stress both mentally or physically. Some of them made conscious
effort to broaden their comfort zone in order to habituate to overwhelming places such as noisy
malls or cafes. Other people could also be a source of reassurance in times of distress. Moreover,
the interviewees described various personal strategies to prevent or reduce stress when they were
already agitated by either breathing techniques, rocking, humming or engaging in enjoyable
sensory stimulation. Previous qualitative studies identified similar themes of coping mechanisms
including repetitive movements, blocking out inputs, dampening the intensity of sensory
stimulation, entering inner world and avoiding certain places (Jones et al., 2003; Smith & Sharp,
2013).

Impact of sensory differences

The responses of the interviewees outlined the overall impact of having increased sensory
sensitivities. Many areas of the interviewees` lives were affected to a lesser or greater extent. Two
major sub-themes emerged as follows: psychological well-being and physical well-being. There
were a number of sub-themes within those two groups.

Psychological well-being

Increased sensory sensitivities had both negative and positive impact on the psychological
well-being of the interviewees. The positive ones included a greater self-awareness
resulting in self-acceptance in some of the cases. Having to make an effort to adjust
themselves or the environment in order to deal with sensory stress produced a better

30
understanding of themselves in the long term. For instance, John recognized his socially
withdrawn lifestyle with acceptance and acknowledged the benefits of it too:

“…I guess they tend to have made me more cautious and withdrawn than is my nature,
more calculating perhaps? But on good, sunny days, I have had fun too……………. I think
kinda having too has helped make me more analytical and a better writer/researcher…”
(John, 2, 132, p.4)

Thomas came to terms with his differences and learnt about the ways his sensory
processing affected his body:

“…Being more empathic and aware of how my body deals with stress and negative
emotions…” (Thomas, 5, 97, p.3)

The interviewees also reported a number of ways their ISS adversely affected their lives
through their cognitive functioning or affective state.

Cognitive functioning

Differences in sensory processing were found to have an impact on more complex

cognitive processes resulting in difficulties with sensory integration, concentration and
auditory processing. These challenges also had a negative impact on the interviewees`
social life making conversations and being with a group of people more stressful.
Furthermore, the interviewees reported cases of sensory shutdown. It has been previously
reported in personal accounts that sensory shutdown might occur in extreme cases of
sensory overload. It means that some or all of the sensory channels stop functioning
(Blackburn, 1997). Isabel experiences sensory shutdown when there is an overload of
auditory stimulation temporarily leaving her with severe hearing impairment:

“…If there is too much sound, as in supermarkets, bowling alleys, watching sports, crowds
in general, loud music and so on, my brain switches the brain off and I become profoundly
deaf…” (Isabel, 4, 38, p.2)

The terms mono-processing and `monotropism` have been used in numerous biographical
accounts of high-functioning individuals to describe when sensory information is only
processed through one channel at the time (Bogdashina, 2003). It has been hypothesized
that the brain switches to mono-processing in order to prevent sensory overload

31
(Bogdashina, 2003). Individuals with AS often report difficulties with engaging in two
activities simultaneously (Iarocci & McDonald, 2006). The current findings were in line with
previous reports. Isabel described her challenges with using two senses at the same time
providing two examples:

“…I find it really difficult to do two things at once, like walking and eating an ice cream at
the same time………………cannot watch and listen to the television together. If I want to
know what the weather is going to be I have to close my eyes and listen to the forecast, or
else block my ears and watch...” (Isabel, 4, 56, 59, p.2)

The reduced ability to filter out background noises led to increased distractibility thus
interfering with concentration and auditory information processing. Thomas found it
difficult to stay focused on the conversation when being highly sensitive to the noises in
the background:

“…more easily distracted by background noises (i.e. people serving food) and less able to
concentrate on words in conversations...” (Thomas, 5, 40, p.1)

Another example of auditory interference was described by Maria. She found it more
difficult to process speech when she had to divide her attention between two people:

“…I can't separate what's being said. If one person asks me something and another starts
talking to me, I feel like a rabbit in headlights and don't know what either of them said! So I
feel foolish staring at them, trying to work it out…” (Maria, 1, 56, p.2)

The accounts of the interviewees were supportive of previous findings in which increased
sensory sensitivity was linked to difficulties with concentration (Carrington and Graham,
2001). Furthermore, there are some neurological findings that are consistent with the
present accounts. Sensory gating describes the capacity of the brain to regulate its
sensitivity to stimulation (Davies, Chang, & Gavin, 2009). Researchers suggested that a
failure in sensory gating can be responsible for processing irrelevant stimuli such as
background noises resulting in problems with attention or in extreme cases sensory
overload (Seri, Pisani, Thai, & Cerquiglini, 2007).

Additionally there has been some empirical evidence for difficulties with multiple-sensory
integration (MSI) such as processing visual and auditory information simultaneously
(Iarocci, Rombough, Yager, Weeks, & Chua, 2010) or integrating proprioceptive and visual
32
information (Mostofsky & Ewen, 2011). The reports of the interviewees regarding
difficulties with carrying out two activities at the same time were in line with these
findings. Consequently, it is clear that sensory processing is essential for more complex
cognitive processes. Hence, research in this field has wider implications for theories
regarding other core features of AS including difficulties with social cognition (Baranek,
Little, Parham, Ausderau, & Sabatos-Devito, 2014).

Affective state

Increased sensory sensitivity largely affected the emotional state of the interviewees. A
number of them reported how irritable, agitated, angry or anxious they can become when
bombarded with unpleasant sensory stimulation. They explained this by the fight or flight
response of their nervous system, which is indeed supported by previous research (Schoen
et al., 2008). For instance his increased sensitivity to sounds at times put Thomas into a
highly anxious state:

“…feeling anxious, initiating fight-flight claustrophobia like responses…” (Thomas, 5, 34,

p.1)

Isabel felt weary and irritable from certain colours and light:

“…I get very tired as well as bad tempered.” (Isabel, 4, 50, p.2)

More intense anger filled reactions and rage were also reported by the interviewees.
Karen`s irritability escalated quickly when being exposed to specific noises:

“…"irritating" where I get sort of manic like with ticking clocks………….. muffled noises where
I feel like I`m going crazy and want to kill someone.” (Karen, 3, 52, 53, p.2)

The findings showed that having ISS can result in numerous negative emotions on a regular
basis. The interviewees experienced intense anger, anxiety and irritability as a result of
sensory stress. As discussed earlier on, anxiety can set off a `vicious cycle` leading to
increased sensitivity that will result in more anxiety and so on. The current personal
accounts were in line with previous findings in which increased sensory sensitivities were
associated with high levels of anxiety (Smith & Sharp, 2013, Green & Ben-Sasson, 2010)
and with depressive symptoms including low mood, low energy levels and irritability
(Kinnealey, Koenig & Smith, 2011).

33
 Physical well-being

The interviewees described the adverse impact sensory differences can have on their
physical well-being. It ranged from headaches and fatigue through difficulties with sleeping
to broken bones. Some of the outcomes directly resulted from sensory sensitivity whereas
others were related more indirectly to the issues. Although the theme is discussed
separately, the connection between psychological and physical well-being should not be
overlooked. In direct relation to his increased auditory sensitivity John encountered
difficulties with sleeping:

“…It is very uncomfortable at times, particularly when trying to sleep…” (John, 2, 21, p.1)

Sensitivity to light or colours resulted in physical symptoms for some of the interviewees.
John explained the outcome of too much glare:

“…can give me a headache and/or nausea, in extreme conditions” (John, 2, 38, p.2)

Thomas experienced similar symptoms in response to bright colours:

“…colour sensitivity……….causing headaches and sensory fatigue…” (Thomas, 27)

When the interviewees experienced a sensory overload their bodies had an adverse
reaction too. For instance John suffered from intense migraine following a sensory
overload:

“…Violent migraine, to the point of hallucinating…” (John, 2, 118, p.4)

Isabel`s sensory differences had a slightly more indirect impact on her physical well-being.
The combination of her proprioceptive issues and her difficulty doing two things at the
same time resulted in accidents, falls and broken bones:

“…My balance is awful and I fall over a lot………..I tend to walk into door frames and have
broken shoulder bones on many occasions…” (Isabel, 4, 52, 54, p.2)

Overall, the findings on the impact of sensory differences provided some insight in relation to the
second research question regarding how sensory experiences affect the interviewees` lives. It was
clear from the accounts that having increased sensory sensitivities had a major impact on the
psychological well-being and some impact on the physical well-being of the interviewees.
Throughout the process of working out coping strategies and adapting to their ISS the
34
interviewees also acquired a good sense of self-awareness that contributed toward their self-
acceptance. The current findings regarding cognitive functioning and affective state were
consistent with previous research as discussed above. However, the impact of ISS on physical
health has not been discussed in previous qualitative studies on adults with AS. The implication is
that difficulties with sensory processing should be taken seriously when designing interventions
with targeting both psychological and physical outcomes. Further research is needed on the scope
of impact of sensory differences in order to explore possible links to anxiety, depression,
concentration problems or migraine and fatigue attacks. Moreover, as previous studies showed
sensory overload had a negative impact on retaining employment, which further emphasizes the
importance of focus on this area (Hurlbutt & Chalmers, 2004; Müller, Schuler, Burton, & Yates,
2003).

Additional observations

It should be noted here, that all of the interviewees demonstrated a great level of self-awareness
and were very articulate in their reflections. Individuals with AS tend to prefer written
communication and claim to feel more free to express themselves which potentially had a positive
influence on the richness of the data. Thus, future researchers should take this into account when
conducting interviews with people with AS. Additionally, interestingly the interviewee who
reflected the least self-acceptance was the one who received a diagnosis very recently. It might be
a reasonable assumption that the longer time passed from receiving a diagnosis the better
individuals understand and accept their idiosyncrasies. Implication of this observation could be
relevant to support groups for adults with AS, where individuals diagnosed long ago could partner
up with those diagnosed recently in order to exchange insights and create mutual support.

General implications

In relation to future studies this study highlighted the importance to continue the line of research
on sensory experiences for the purpose of raising awareness about the nature, diversity, scope
and the impact of sensory differences among professionals, carers and individuals with AS. This
will aid clinicians, therapists and researchers in their understanding of the unique sensory
perceptual world of individuals with AS and will contribute towards better tailored interventions
targeting the sensory components of their daily routines. Qualitative studies are especially
recommended in order to make the voices of people with AS heard and to cultivate acceptance

35
towards them. Moreover, the current study calls for an acknowledgement of sensory differences
among adults with AS instead of the dominant focus on children in this field.

Regarding interventions, findings of the present study could contribute towards a list of coping
strategies that were `tested out` by the affected individuals and that would form an important
part within support programs. For instance information leaflets could be produced for individuals
being diagnosed with AS including an explanation of sensory processing, common issues, coping
strategies and brief accounts of others` experiences. Moreover, starting support groups
specifically for adults with sensory processing challenges would be highly beneficial in reducing the
sense of isolation some of these individuals experience and it would be a great place to exchange
coping strategies. Furthermore, the very first prototype of a sensory friendly school for pupils with
ASC is currently being built in Cairo as part of a large scale project called `Architecture for autism`
(Mostafa, 2014). This means that the actual implementation of findings on sensory needs is still in
its premature phase. Consequently, both research and interventions focused on designing sensory
friendly domestic, working or school environments are highly recommended.

In relation to the diagnostic criteria of autism there are still some outstanding arguments in the
literature. The increasing body of evidence for sensory perceptual idiosyncrasies on the autism
spectrum was eventually taken into account when modifying the latest version of the Diagnostic
and Statistical Manual of Mental Disorders (DSM). In the fifth edition of the DSM hyper and hypo
reactions to sensory input were included for the first time in the diagnostic criteria for ASC
(American Psychiatric Association, 2013). However, they are placed under the category of
`restricted repetitive patterns of behaviour` and is handled as an additional feature to determine
the severity of ASC and not as a core characteristic. Some researchers argue that sensory
perceptual differences are a core feature of ASC (Ben-Sasson et al., 2009) and should receive more
attention both in diagnosis and interventions (Wing, Gould, & Gillberg, 2011). Therefore it would
be more beneficial in future research to address how interventions could target sensory related
needs instead of gathering more data on the already established status of sensory differences.

Strengths and weaknesses

The present study holds both strengths and limitations. One of the strengths is that in contrast to
previous qualitative studies it reported findings on each sensory domain that allowed for a more
idiosyncratic view of sensory experiences rather than a generic one. Although the study looked at

36
only five individuals, the findings were in line with previous personal accounts and qualitative
themes. Thus it also provided information demonstrative of some common aspects of AS. A
further strength lied within the study`s qualitative approach that allowed the voices of the
individuals to be heard, which is highly important when the nature of the research topic is as
subjective as the present one`s.

One of the limitations was that other factors than AS in sensory sensitivity including dyslexia and
head injury were not controlled for in the inclusion criteria. These factors might have been the
primary cause of light sensitivity that confounded the findings. Moreover, the use of chat to
conduct the interviews might raise some issues including reduced control over the interviewing
process and a lack of non-verbal language. Additionally, the time constraints did not allow for
multiple interviews in order to thicken certain areas of data or to explore other aspects of sensory
experiences such as hypo-sensitivities. The present study could have also been improved by
employing triangulation with quantitative data using for instance the recently developed Sensory
Processing Scale that measures over-responsivity in each sensory domain. A further weakness
existed in the sampling and interviewing process that took place on the internet, making the
sample skewed towards a population with the ability to use a computer. Consequently, future
research could benefit from considering these limitations.

Conclusion
In conclusion, the present study explored the sensory world of five adults with AS using a
qualitative approach. Consistent with previous research and first-hand accounts the presence of
increased sensory sensitivities (ISS) was found in numerous sensory domains including smell,
touch, hearing, vision or balance. These sensitivities were very specific to each individual and were
variable depending on both external and internal factors. High levels of anxiety and stress have
been identified both as precursors and outcomes of sensory overstimulation. Having ISS had an
impact on the interviewees` social life, cognition, emotional state and physical well-being.
However, positive aspects have been reported too. Specific sensory stimulations were sought out
by the individuals and served as coping strategies or sources of comfort and pleasure. The majority
of interviewees perceived their sensory differences as a multifaceted and integral part of their
lives showing both self-acceptance and responsibility for dealing with the challenges. A wide range
of coping strategies were described including the avoidance of overwhelming environments such
as parties, shops or crowds; the support of other people or preparation in advance. The findings

37
highlighted the importance of addressing sensory related needs of adults with AS both in research
and practice. Support groups for adults with sensory difficulties or the design of sensory friendly
environments should be a priority of AS interventions. Overall, the understanding of the subjective
sensory experiences of individuals on the autism spectrum is vital in order to create more
acceptance and care towards them in society as well as to personalize interventions and to
improve support services.

I acknowledge my personal interest and relation to the topic of the present study. I consider
myself as being affected by sensory issues and other AS related features, which provided the
motivation to carry out this project in the first place. Moreover, I highly value and believe in the
notion of neurodiversity that was developed by high-functioning individuals on the autism
spectrum. It promotes that AS is not a disorder, but instead is an alternative way of being, just
another part of the diverse spectrum of human experiences. I believe that sensory idiosyncrasies
should not be labelled as impairments, dysfunctions or abnormalities but instead viewed as simple
differences without a pathologizing overtone. My opposing standpoint against the notions of
normality or abnormality had a profound impact on my current study as a whole, the
methodologies I chose, the interpretations I made and the terms I used throughout my discussion.

38
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Appendix I. – Participation information sheet

PARTICIPATION INFORMATION SHEET

A qualitative study of unusual sensory experiences of adults with Asperger Syndrome or high-functioning autism

This research is being conducted by Zsofia Maurer as part of a BSc (Hons) Psychology degree course at the University
of Westminster. It is being supervised by Carol Pearson in the Psychology Department and it has been approved by the
University/Departmental Ethics Committee.

The research is concerned with the personal accounts of adults with Asperger syndrome or high-functioning autism
about their sensory experiences. Over-or under sensitivity in the domains of vision, smell, taste, touch or hearing are
very common among individuals on the autistic spectrum. There is a need for real-life data in this area; therefore this
study uses in-depth online interviews. The aim is to gain a better and deeper understanding of these aspects of the
autistic spectrum and to discover new directions for future research.

You will be asked to complete an online, written interview which will ask you to answer questions covering areas such
as oversensitivity to sensations or coping strategies. You will also be asked to provide some demographic data. The
whole procedure should take between 30-60 minutes to complete.

Please note that:

• Participation is entirely voluntary, and you have the right to withdraw at any time without having to give a
reason.
• You have the right to ask for your data to be withdrawn as far as this is practical
• You do not have to answer particular questions if you do not wish to.
• Your responses will be treated with full confidentiality. No individuals will be identifiable from any written
report of the research, or any publications arising from it.
• You will receive debriefing information at the end of the study.
• If you need to contact the researcher after participating, please send an email to
[email protected]
• All activities undertaken by the University are fully covered by insurance.
• All personal information you provide will be kept securely, and you have the right to ask for it to be destroyed

If you consent to participate under these conditions, please fill in your full name, date and tick the box below. Then
please send your completed form to this e-mail address: [email protected] This consent form will be
stored separately from any data you provide so that your responses remain anonymous.

CONSENT FORM

I have read the Participation Information Sheet and I am willing to participate in the research study.

Print name

Date

All reasonable steps have been taken to provide an appropriate explanation of the research to the participant

Signed ___________________________ Researcher_______________________ Date __________

45
Appendix II. – Interview protocol

Interview protocol

Intro/warm-up

Hi, first of all thank you for deciding to take part in my study.

I`m going to ask you about your senses and the way you feel about them. The interview will last no more
than an hour. If you feel like stopping, you can do it any time and you won`t need to give me a reason for it.
Just let me know. You also have the right not to answer any of my questions if you don`t want to.

Demographic details:

Let me start with asking a few details about you. Can you tell me where you are from and what your age is?

So at what age did you learn about your diagnosis?

First section

Now, I`m going to move onto questions about your senses.

To start/begin with…

Have you noticed that some sensations (smells, touches, sounds, textures, tastes, colours, light, movement,
balance, temperature etc.) cause discomfort or frustration to you?

If yes, can you tell me a few examples from each type of sensation that is relevant to you? Please try to
think how and why it makes you feel the way it does when answering this question.

Prompts

Could you tell me more about them? Tell me more about that.

Can you describe them in more details?

How so?

How does that make you feel?

How do you feel about that?

Can you expand / elaborate on that?

What is that you don`t like about it/them?

In what ways does it irritate/annoy/frustrate/bother/upset/disturb you?

Do you think it influences any areas of your life? How so?

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If reduced description of sensations, then use more targeted questions about each, plus following ones:

o How is your coordination?

o How easy do you find travelling?
o How do you feel in crowded places? What is that you find
annoying/irritating/distressing/frustrating?
o How do you find it to judge the distances of objects?
o Can you tell me about your concentration?

Second section

Now I would like to move onto some other kinds of sensations. Are there any (smells, touches, sounds,
textures, tastes, colours, light, movement etc.) that you particularly like or find pleasurable, calming or
fascinating?

Again please try to give as much detail as you can think of when describing them. Also think about in
what ways they appeal to you.

Prompts

Would you tell me more about them?

Can you describe them in more details?

How so? How does that make you feel?

Can you expand / elaborate on that?

In what ways does it interest/fascinates/attracts/appeals to you?

Do you think it influences any areas of your life? How so?

Final section

Do you do anything to reduce the discomfort of the sensations you mentioned? Could you tell me about
them?

Overall, how much and in what ways do you think your sensory experiences influence your daily life?

Is there anything else you think would be useful for me to know so that I can have an accurate picture of
your sensory experiences?

Well then, I should have all the information I need. Now that we are approaching the end of this interview,
I would like to thank you for your time and shared experiences. It has been a pleasure finding out more
about you. I appreciate your engagement. All the information you shared today will be handled with full
confidentiality. If you would like to find out more about my study, please don`t hesitate to contact me by e-
mail and I will send you a summary of my dissertation once it is finished.

Would it be alright to contact you by e-mail if I need to clarify any parts of the interview?

Thank you again and take care!

47
Appendix III. – Example interview script

Interview 2. – 01/01/2014 - John

JOHN: Hola and Feliz ano nuevo,

INT: muchas gracias :) hi

INT: first of all thank you for deciding to take part in my study

JOHN: My pleasure.

INT: I`m going to ask you about your senses and the way you feel about them. The interview will last no
more than an hour. If you feel like stopping, you can do it any time and you won`t need to give me a
reason for it. Just let me know. You also have the right not to answer any of my questions if you don`t
want to.

INT: Let me start with asking a few details about you. Can you tell me where you are from and what
your age is?

JOHN: From Bristol and I'm 51 (I think).

INT: So at what age did you learn about your diagnosis?

JOHN: 7 when dx-ed with general oddness, 20 with autism and 40-ish when it was refined to Aspergers,
with mild dyslexia and moderate dyscalculia.

INT: I see. Now, I`m going to move onto questions about your senses.

INT: To begin with, have you noticed that some sensations (smells, touches, sounds etc…) cause
discomfort or frustration to you?

JOHN: Yes, at times, I have extraordinary hearing-can hear dog whistles among other things. Low notes
not so much but I can hear above the normal range and have twice been tested in acoustic labs to
verify. It is very uncomfortable at times, particularly when trying to sleep, or when I was young
explaining I could hear things they couldn't-most thought I was nuts-until the lab tests. I hate loud noise
though in general, which is, of course a bit of a social handicap. On the other side I hear detail in both
music and nature beyond others which can be a wonderful gift.

JOHN: Plus, good hearing is a very useful early warning thing.

JOHN: Eyes, I have astigmatism, touch, a very light touch, I'm good at testing painted surfaces, glass etc
for imperfections, smell, above normal, taste, at or below average judging from other people.

INT: are there any textures, colours or tastes that you find bothering?

JOHN: hate aubergines and beetroot and spring onion among others, colours, no I like all colours, I
don't like sharp hard textures, or clammy ones like nylon shirts-prefer natural fibres.

JOHN: oh and cucumber.

JOHN: hate it

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INT: you mentioned vision

INT: what about lights? have you noticed anything about your reaction to bright light?

JOHN: Yes, I do NOT like bright light at all.

INT: what is that you don`t like about it?

JOHN: It hurts my eyes, restricts my vision a great deal by glare, can give me a headache and/or nausea,
in extreme conditions and it makes me sneeze-although I notice bright light makes quite a few people
sneeze.

INT: so, you wrote about an above normal sense of smell. Can you give me an example when you
noticed this previously?

JOHN: I saved a few places by smelling gas leaks before anyone else present. I smelled, they couldn't I
said "look call the gas board" and hey, they found gasleaks, once a major one in the street when I was a
kid.

INT: it does sound like a gift indeed

JOHN: Yep.

INT: so what did you mean by writing that you have a below average taste compare to other people?

JOHN: Well, people seem to find more flavours or nuances in the same foods than me, like they can
taste better, not massively different but there.

INT: I see, so let me ask about a few more sensations

INT: Are you aware of any reactions to hot or cold temperatures?

JOHN: Yes, love the warm hate and fear the cold, my father and grandfather were exactly the same. My
dream is to live in a 30C climate all year round.

INT: have you noticed anything about your body`s temperature regulation? anything different from
others?

JOHN: I'm not sure, how do you mean?

INT: there were some accounts from people on the spectrum reporting that often they felt hot when
others were cold, or the other way around

JOHN: Ah, then yes, I feel cold when others feel ok but in 30C+ they'll be wilting and I won't even sweat,
which could be because, according to Drs my NORMAL body temp is well below average-you can't
belive how frustrating and angering it is to have a fever and explain to some idiot yokel GP that 98.8.F
IS a fever for me-they usually write it off as hypochondria-until they get a letter from my specialist and
then a reprimand from the authorities.

INT: must be frustrating

JOHN: It is, in Bristol itself it's good, but in the yokelvilles around, it's the 1950's.

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INT: ok, let me move onto the next question

INT: what about your concentration? If you have any challenges, how does that show up in social
situations?

JOHN: I get bored easily by trivia.

INT: I also mean whether you are able to filter out others speech and noises

JOHN: Yes.

JOHN: And the reverse, I can tune into people's speech if I want to earwig.

INT: can you tell me about how you feel in crowded places?

JOHN: depends on the general atmosphere and who is there, I am not at all claustrophobic but large
groups of tightly packed people do make me uncomfortable. I'm not a `press-the-flesh, touchy/feely
person`.

INT: so connecting to this, how do you feel about others touch?

JOHN: Not keen in the main...yet with Spanish people, I have spent a lot of time in Spain, it's FAR less
pronounced. I wonder if it could be a psychological thing, the English I find are a cold people and that
repels me, the Spanish are not, my Spanish friends regard me as pretty normal, in England, pretty
abnormal. So there is a thought, how much of AS is a cultural perception and how much clinical
science?

JOHN: I also dislike touching men more than women.

INT: that is a very interesting point to think about

INT: what about your coordination?

JOHN: I was a sports-star at school and a motorbike and kart racer.

INT: so you wouldn`t say that you have challenges in that area

JOHN: Am also pretty nearly ambidextrous.

JOHN: No.

JOHN: I know ASD people tend to be "clumsy", but not me so far.

INT: alright then

INT: so now that you shared some of the difficulties you experience (and some gifts) I would like to
move onto some other kinds of sensations. Are there any which you particularly like or find
pleasurable, calming or fascinating?

JOHN: Oh, many, music, watching people using their hands-things like pottery-making or weaving, the
repetition and fluidity of movement I find hugely calming. Certain familiar TV programmes can induce
tranquillity, even, sometimes especially if I've seen them many times before, ditto certain long-loved

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books, certain smells-to my mind the most evocative of the senses, flowers, moving water, the purrs of
my cat and many more.

JOHN: Fascinating, as a kid I would spin a marble round a bowl FOR HOURS and I still love the Newton's
cradle-you know the 5 steel globes on wires.

JOHN: Love watching fish in the ocean-did a lot of diving.

INT: do you intentionally seek out any of these or others as a sort of coping mechanism when you feel
stressed or frustrated?

JOHN: yes.

INT: could you describe to me any other coping techniques you engage in when being bombarded with
unpleasant sensations?

JOHN: leaving, I am not a drinker, I do use xanax when needed and consider it the best AS supplement
out-aside from harder drugs. And of course I have experienced-many times both meltdown and
shutdown.

JOHN: I use earplugs and a flying-kit style eyemask.

JOHN: Principally though I try to avoid situations which are likely to be stressful-leading to a rather
hermetic lifestyle, or just brass it out on occasions.

INT: would you mind describing me an example when you experienced a sensory meltdown?

INT: what triggered it and how did you feel before and during?

JOHN: Violent migraine, to the point of hallucinating, all I can do it use ice on my head, vomit if
possible, blacked-out room, even a chink of light and I'll scream and painkillers, I don't believe they
have a single cause, but most seem linked to chemical/food intolerance and have know mostly now
what not to eat. Emotional over-stimulation can make me freeze (shutdown, emotions,
communication, the lot, or put me into a screaming rage, when I just have to leave and have a walk.

JOHN: Both, all leave a feeling -obviously of relief and destressing, but are also very shaky and
distressing, because you think "Is THIS what I really am"? Also illness triggers huge anxiety in me and
that is horrible-indescribable to anyone who hasn't experienced the real thing-not talking about pre-
test nerves here, but real anxiety-and I have almost always been right-that there was more wrong than
the Drs found initially.

INT: these all sound devastating. overall, how much would you say the difficulties you mentioned today
affect your day-to-day life?

JOHN: Totally dependent on whether any of those situations occur-although the memories of the
experiences always haunt around the edges on the best of days., so I guess they tend to have made me
more cautious and withdrawn than is my nature, more calculating perhaps? But on good, sunny days, I
have had fun too.

INT: thank you for sharing that, and I am glad that you found ways of dealing with the stresses of the
world and perceive many of your abilities as gifts

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JOHN: I think kinda having too has helped make me more analytical and a better writer/researcher

JOHN: I mean, Leonardo, Bill Gates, Steve Jobs, Nikola Tesla, Einstein, Darryl Hannah, each an aspie and
many more.

INT: Yes, it is a fascinating way of being, so much to learn from it for neurotypical individuals. I am
looking forward to reading your book. Well, it has been a real pleasure finding out more about you.
Now that we are approaching the end of this interview, I would like to thank you for your time and
shared experiences. I really appreciate your engagement.

JOHN: Cool, and thank you for the opportunity and for telling people about the book-because it is, all
modesty aside the best of its type (not my opinion), the reviews have been amazing, if you could share
the link wwwianchalephd.com , great.

INT: Sure! Also, if you would like to find out more about my study, please don`t hesitate to contact me
by e-mail and I will send you a summary of my dissertation once it is finished.

INT: Is there anything else you think would be useful for me to know so that I can have an accurate
picture of your sensory experiences?

JOHN: Thank you, I will. Give me a min or two to think, not really, except perhaps to place a bit more
emphasis on how sensitive to touch and texture I am, very tactile.

INT: you mean that you feel tiny details by touch?

JOHN: Oh yes, I do really like water, swimming, diving, much more than most-I mean most people don't
wreck-dive for fun I think.

INT: what is it about water the appeals to you so much?

JOHN: Yes, I do, very useful when checking the quality of paint spraying, I'd close my eyes and be able
to feel any filler, bubble, anything.

JOHN: Don't know, I just love watching rivers, ponds, streams, bathing swimming. Perhaps Aspies are
more attuned to nature, after all all life on earth originally came from the oceans, so perhaps it is that
primal instinct. I like to walk on the beach or parks barefoot, it is something else which I find calming.

INT: So, I should have all the information I need. Thank you so much for sharing again!

INT: Would it be alright to contact you by e-mail if I need to clarify any parts of the interview?

JOHN: Yes, anytime.

INT: great, so thanks again, and take care!

JOHN: Thank you too, it was very enjoyable, enjoy your day.

INT: you too

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