Fascination and Isolation: A Grounded Theory Exploration of Unusual Sensory Experiences in Adults...

ORIGINAL PAPER

Fascination and Isolation: A Grounded Theory Explorationof Unusual Sensory Experiences in Adults with AspergerSyndrome

Richard S. Smith Jonathan Sharp

Published online: 25 August 2012

Springer Science+Business Media, LLC 2012

Abstract Unusual sensory experiences are commonly

seen in people with Asperger syndrome (AS). They cor-

relate with functional impairments and cause distress. The

current study investigates how these experiences have

affected nine adults with ASs lives, as well as the coping

strategies utilised. Semi-structured interviews were con-

ducted using Instant Messaging software. Data were ana-

lysed using Grounded Theory. A number of inter-related

categories and focused codes were identified. The catego-

ries included heightened senses, sensory stress, the stress

avalanche, moderating factors, coping strategies, other

people, self-acceptance, fascination, and isolation. A model

was constructed as to how these categories and codes

interact. How these findings link with previous research

into autism spectrum disorders is discussed. Implications

for services and future research are also made.

Keywords Asperger Autism Sensory Internet Messaging Qualitative

Introduction

Autism Spectrum Disorders

Autism is a neurodevelopmental disorder characterised by

impaired social interaction and communication, and by

restricted and repetitive behaviour (RRB) (American Psy-

chiatric Association 1994). These three areas form the

autistic triad. Autism is now seen as one of the five

pervasive developmental disorders (PDDs), of which

another is Asperger syndrome (AS). To make a diagnosis

of AS, people should have normal overall cognitive abili-

ties and language development (e.g. no language delay),

but have significant difficulties in social interaction as well

as exhibiting RRBs.

Unusual Sensory/Perceptual Experiences

A significant feature of PDDs (also commonly called

Autism Spectrum Disorders or ASDs) appears to be unu-

sual responses to sensory stimuli (Frith 1989). These

unusual sensory experiences (USEs) have been described

by researchers and people with ASDs alike. Kern et al.

(2006) demonstrate the wide variety of USEs people with

ASDs can present with, (also found by other researchers

e.g. as discussed by Baranek 2002). They may be apparent

in all sensory domains, for instance in over-sensitivity in

the tactile domain (e.g. extreme dislike of being touched),

taste (e.g. dislike of certain foods), or auditory domain (e.g.

a painful response to certain types of noises). People with

autism may also appear to be under-sensitive to certain

sensory inputs e.g. not appearing to notice people talking or

touching them. They may also be described as sensory-

seeking, becoming fixated on certain stimuli (e.g. spinning

tops, spinning around or making noises). These three

Dr. Richard S. Smith formerly worked at Oxford Institute of Clinical

Psychology, University of Oxford and Oxford Health Foundation

Trust, Oxford, England, where the research was conducted.

R. S. Smith (&)Sheffield Health and Social Care NHS Foundation Trust,

St Georges Community Hospital, Winter Street, Sheffield,

South Yorkshire S3 7ND, UK

e-mail: [email protected]

J. Sharp

Northamptonshire Adult ADHD and Asperger Team,

Northamptonshire Healthcare NHS Foundation Trust,

Northampton, UK

J. Sharp

St Marys Hospital, 77 London Road, Kettering,

Northamptonshire NN15 7PW, UK

123

J Autism Dev Disord (2013) 43:891910

DOI 10.1007/s10803-012-1633-6

categories may also co-occur in the same person (Baranek

et al. 2006). They may fluctuate between environments

(Brown and Dunn 2010).Problems may also be present in

switching between senses or integrating information from

more than one sense.

Up to 95 % of people with ASDs can be shown to have

USEs (e.g. Tomchek and Dunn 2007), which may well be

lifelong, albeit with some attenuation in certain areas (Kern

et al. 2006). The severity of sensory processing problems is

correlated with poorer behavioural, emotional and adaptive

functioning, as well as more severe autistic symptoms

(Baker et al. 2008; Gabriels et al. 2008).

A small number of qualitative studies looking at first-

hand accounts of having an ASD now exist from people

with an ASD and these provide valuable insights into both

the nature and subjective experience of autism. A common

issue to emerge from many qualitative studies on living

with an ASD concerns peculiar perceptions. General

sensory problems were found as one of five themes of the

experience of autism by Cesaroni and Garber (1991).

Sensory problems were also evident in an inability to

concentrate and having restricted diets (Carrington and

Graham 2001), finding it harder to be with more than one

person at the same time, enjoying quiet alone time (Muller

et al. 2008) and a strong dislike of noise and crowds

(Humphrey and Lewis 2008; Fleisher 2001). The main

finding of Chamak et al. (2008) was that emotional dys-

regulation and unusual perceptions were the core symp-

toms of autism, throughout the lifespan. The perceptual

differences reported were in multiple sensory domains and

varied in different accounts between being hyper- or hypo-

sensitive, switching between these two or in integrating

different senses. The accounts described perceptual issues

leading to problems in social situations and places (e.g.

problems having people near them or bright lights) and

with language (e.g. listening and watching people speak).

The perceptual problems were also said to lead to repetitive

behaviours both in order to calm down (e.g. rhythmic

movements or seeking deep pressure), and also as a source

of pleasure due to a fascination with certain patterns,

smells, tastes or movements.

Some researchers have used qualitative methods to

investigate USEs specifically in people with high-func-

tioning autism (HFA)/AS. The researchers have related the

USEs to the triad of autistic impairments. For example,

Chamak et al. (2008) used a form of content analysis with

15 autobiographical accounts and five interviews. Jones

et al. (2003) used modified Grounded Theory to examine

five web pages written by people who said they had AS and

found four key themes in their perceptual experiences:

turbulent sensory perceptual experiences, coping mecha-

nisms for them, enjoyable sensory experiences and the

sense of being different to other people.

The Current Study

Chamak et al. (2008) and Jones et al.s (2003) studies, as

well as previous studies, have relied upon the writings of a

few very talented and well-known people with ASDs or are

based on interviews with small sample sizes, and/or people

whose diagnosis could not be verified. Additionally, the

methodology used did not allow relations between factors

to be demonstrated.

A qualitative methodology was chosen for the current

study due to the slight lack of research in this area and to

help retain the richness of the data that could be gathered.

Grounded Theory offers the potential to generate a theo-

retical framework for how USEs affect the lives of people

with ASDs. It addresses research questions around indi-

vidual processes, interpersonal relations, and the reciprocal

effects between individuals and larger social processes

(Charmaz 2006). Furthermore, Grounded Theorys stress

on the processes by which individuals construct meaning in

relation to their social context (Charmaz 2006), makes this

a useful methodology in helping investigate how USEs

affect the social lives of people with ASDs. Modified

Grounded Theory was used in a flexible way for the current

study and some of the modifications deemed appropriate

are presented in the Method section.

The Internet is seen as very important in communication

for people with AS, as they feel more confident using this

medium (Davidson 2008; Jones et al. 2003; Muller et al.

2008). As an example, Singer (1999), while writing about

her discovery of having AS, said that on the internet,

freed from the constraints of NT (neurotypical i.e. a person

without autism) timing, NT ways of interpreting body

language, free from the information overwhelm of eye

contact, the energy demands of managing body language,

they sound, simply, normal, and often, eloquent. It is

also thought that as people with ASD often suffer from

high rates of social anxiety (Kuusikko et al. 2008), this

medium may provide a more relaxing form of interview

because it will take place in their own home and they will

not need to meet a new person.

Online Instant Messaging (IM) has previously been

described as a viable and reliable method of data gathering

(Kazmer and Xie 2008; Stieger and Goritz 2006) and was

used to gather data in the current study. Stieger and Goritz

(2006) and Kazmer and Xie (2008) outline some of the

benefits of using IM for research interviews. These include

its ability to interview hard-to-reach populations, lower

costs, the ease of scheduling interviews and the lower risk

of transcription errors. Additionally, participants can give

more thought out responses than in face-to-face conversa-

tions. However, with the benefits come some downsides

such as having less control within the interview, partici-

pants potentially being distracted, other people entering the

892 J Autism Dev Disord (2013) 43:891910

123

room, and participants non- and para-verbal language not

being visible. There can also be some conversational

disorder as participants may not have fully completed an

answer before the next question is asked. As compared

with email interviews, IM can give more evidence of a

persons thought process, as well as having a lower rate of

participant attrition. It was therefore important to be aware

of some of these issues in the current study and attempts

were made to ameliorate these problems, for example by

adjusting to a participants typing speed and pausing before

asking the next question.

The present study aimed to understand how USEs affect

the adult with AS. People with AS were chosen due to their

normal language development and overall cognitive abili-

ties. Using modified Grounded Theory methodology, the

study aims to generate a theory, which describes the nature

of the relationship between USEs and the effects on the

persons internal experience, social life and daily func-

tioning. The following research questions were

investigated:

1. How do unusual sensory experiences affect people

with AS in their lives?

2. What strategies do people with AS adopt in response to

these experiences?

3. What do participants think the long-term effects of

these experiences have been?

Method

Participants and Procedure

Nine participants were recruited and interviewed from a

local service for adults with HFA/AS. People who had

received a diagnosis of AS in either adulthood or childhood

were to be included, but only participants with adult

diagnoses ended up being recruited. People on psychotro-

pic medication were included (this was noted). It was

planned that people who did not report any USEs were to

be excluded as this is the topic of the study, but this applied

to none of the potential participants.

Participants had received a diagnosis in adulthood by

clinical psychologists in the local service using the Adult

Asperger Assessment (Baron-Cohen et al. 2005) with the

person and the Diagnostic Interview for Social and Com-

munication Disorders (Wing et al. 2002) where possible

with a relevant relative, as well as clinical judgement.

Methodology

Nine participants were interviewed with seven completing

a second interview. Interviews were conducted between

two secure email accounts using IM software embedded in

the internet browser. Interviews began with demographic

information being collected before questions were asked

about whether the participants were under- or over- sen-

sitive to certain sensory inputs and whether there were any

they sought out or particularly liked. This was followed by

an open-ended question about how this had affected the

persons e.g. how do you feel these unusual sensory

experiences have affected your life?. As is standard with

Grounded Theory, the interviews mostly proceeded using

the participants own answers as the basis for the following

questions. Additionally, questions were partly guided by

the sensitising concepts and codes highlighted in the iter-

ative Grounded Theory process e.g. to help thicken certain

areas of data. For less loquacious participants, an interview

schedule was drawn up which was used as a guide for

questions, although this was very rarely used. Brief feed-

back on the use of IM was requested at the end of the

interview. Interviews lasted between 60 and 90 min.

Design

The term Grounded Theory does not represent one sin-

gular method or process, but instead can be seen as an

umbrella term for related methods, with conflicting opin-

ions and unresolved issues (Cutcliffe 2005); something

common throughout qualitative research (Elliott et al.

1999). Therefore to aid the researcher and the reader,

various issues were considered in conducting and reporting

the research, further information regarding the design can

be requested from the researcher.

Modified Grounded Theory Analysis

Overall the modified version of Grounded Theory used was

that outlined by Charmaz (2006), with modifications made

through the discussions of Elliott et al. (1999) and Cutcliffe

(2005). A summary of the iterative modified-GT analytic

process can be seen in Fig. 1 and is also briefly described

here:

Initially, sensitising concepts were found through a

brief literature search to inform some of the data gathering.

Initial line-by-line coding of the printed transcripts of the

IM interviews was conducted between each interview; the

initial codes that were most significant and/or frequent

were raised to focused codes. Codes were constantly

compared to the data and their definitions refined, a process

occurring throughout analysis. Memos were written to help

these processes.

Theoretical sampling was conducted with new partici-

pants or through re-interviewing participants to seek

important data in developing the emerging theory. Some of

the memos consisted of narratives of the processes

J Autism Dev Disord (2013) 43:891910 893

123

described in order to highlight concepts and areas that were

thick or thin and therefore requiring more data from theo-

retical sampling. Other memos outlined tentative models of

the relationships between categories and the processes

occurring. Once theoretical sufficiency had been achieved

regarding the properties of categories and the links between

them, data collection ended. It was decided that theoretical

sufficiency had been reached when no new themes were

identified, a factor-relating theory could be made and a

coherent narrative of the processes occurring could be

completed.

Credibility checking occurred towards the end of anal-

ysis through asking participants directly during later

interviews or emailing the category properties to partici-

pants and requesting feedback as well as asking a colleague

to read two categories and the data connected to them.

Participants mostly reported categories were representative

of their experiences. For example, Lucy stated:

Wow..that was really really wierd hearing those guys

describe my life. I feel bad for them because i know

how they feel and its not good Your writings areaccurate as far as i am concerned

Any suggestions made were subsequently used.

Throughout the process, consultation was given from a

specialist Grounded Theory researcher.

In order to maintain reflexivity during the process, a

research diary was kept throughout the process and an

interview was conducted with other Grounded Theory

researchers. This helped highlight the authors theoretical

orientations and personal anticipations and how these may

affect later coding. Further information regarding the

Modified Grounded Theory process can be requested by

contacting the first author of the paper.

Ethical Considerations

Full voluntary informed consent was gained from partici-

pants. They were given the right and freedom to withdraw

at any time during the interview or up to 2 weeks after.

Interview data was stored securely. Ethical approval for the

study was granted by an NHS Research Ethics Committee.

Results

Participants Characteristics

To help contextualise the results on the participants, the

participants demographic information can be seen in

Table 1 including the unusual sensory experiences they

reported.

The Participants Experiences

The participants experiences will now be described in

terms of categories (in bold and underlined) and (if present)

their focused codes (in italics), alongside selected relevant

quotations. The links between these categories and codes

are represented in Fig. 2 to show the immediate, short-term

and long-term effects of USEs for the participants. These

categories and their subordinate codes are presented in

Table 2.

Some participants struggled slightly with spelling and

typing. Because of this, and the large amount of text-

speak abbreviations for some participants, some

Fig. 1 The modified Grounded Theory process used in the currentstudy


123

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quotations have been modified slightly for readability when

reporting participants data, although the original quota-

tions have been used as much as is practical.

Summary

As can be seen in Fig. 2, the links between these categories

(in bold) and focused codes (in italics) is somewhat com-

plex with some two-way interactions, moderating factors

and conditions required before certain processes appear.

These will be expanded upon in the main body of the

results section and demonstrated by relevant quotations.

Participants USEs stemmed from their Heightened

Senses. These could either be a source of stress for par-

ticipants or of fascination.

Adverse sensory events caused Sensory Stress where

the participants felt fear or anger, with the strong com-

pulsion to either escape or attack the source of the stress.

Escaping from stressful environments often led to people

learning to avoid such environments and this often led to

social isolation.

However some Moderating Factors could affect how

strongly the sensory events affected the person. Reciprocal

relationships were present with one end of a pole making

the adverse sensory event more stressful and the other end

making it less so:

1. A single input (e.g. one noise) was not as stressful as

multiple inputs were.

2. This was similar for low versus high intensity hits.

3. Ordered and predictable environment ameliorated the

stress, while chaotic environments worsened it.

4. If the participant was calm, this lessened the impact of

the adverse sensory event, while an already stressed

person was more affected.

This last moderator set up a vicious cycle (Sensory

Avalanche) where stress caused the person to become

more sensitive to adverse sensory events, causing them

subsequently to become more stressed and therefore more

sensitive, creating a vicious cycle.

Some participants had discovered Coping Strategies

that impacted upon these moderating factors such as

dampening the intensities, making their environments more

predictable and ordered, blocking out other inputs or using

calming strategies when in stressful situations.

Other People became important factors at different

points:

Heightened Senses

Sensory Stress: fear/anger, attack/escape

Coping Strategies(If happened upon)

Fascination

Distracting

Pleasurable/calmingSkills/ abilities

Avoidance

Positive Interactions with others

Long-term pursuits

Sources of sensory stimuli

Self-Acceptance

Negative interactions with others

CalmSingle input

ChaosMany inputs

Order

High Intensity

Low Intensity

Other People

Moderating Factors*

* The Stress Avalanche

Other People

Positive Interactions with others

Negative interactions with others

Anxiety

With awareness and affection and communication and time

If found at school

If not held back by social skills and practicalities

Isolation

Fig. 2 A model of the processes resulting from USEs


123

1. They could be the sources of sensory stimuli e.g.

through forming noisy crowds.

2. They could interact negatively to a persons USEs by

then rejecting that person, contributing to their

isolation.

3. However certain people, if certain conditions were

met, could become sources of positive interactions,

offering support and helping the person cope with

sensory stressors.

Heightened Senses could also be fascinating for the

participants, being pleasurable or calming. However, as a

result, these sources of fascination caused a lot of dis-

traction in day-to-day life, causing them to have negative

interactions with others.

The heightened senses could then give the person certain

skills and abilities that other people did not have, and if the

person found a practical application for their ability and if

they were not held back by their poor social skills, they

could find a long-term pursuit e.g. a job or hobby. This then

could help the person have positive interactions with other

people.

Participants appeared to learn to accept their isolation

and therefore themselves, finding other things from which

to gain self-esteem e.g. becoming stronger as a person as a

result of the hardships they have faced. Their special skills

could also be a source of pride for the person and praise

from others. These could all result in a degree of self-

acceptance.

Participants Narrative

Heightened Senses

Overall, participants described having heightened senses;

their sensory experiences were unusual in that they

appeared more extreme than for people without ASDs.

That is, when the initial hit of the sensory stimulus was

experienced, the stimulus appeared to be over-amplified or

greatly magnified beyond normal experience:

Robert: Everything seems x amount of times louder

or brighter than probably other people see and hear

things All of my senses feel like they areoveraccentuated

The particular stimuli that were found to be stressful or

pleasurable were quite idiosyncratic to each participant.

What one person found enjoyable another found irritating:

Adrian: birds tweeting makes me very very angry

and makes me panic

Mike: OK noises include mostly anything of nature,

birds, waterfalls, etc. There isnt much in nature

which irritates me

Sensory Stress

Fear/Anger As a result of heightened senses, some

adverse sensory events could be very powerful and

unpleasant. Emotionally, reactions could range from a

feeling of strong discomfort, anger to overwhelming fear

and even pain.

David: I particularly dislike bright sunlight. I hate

conservatories. The irritation it causes is madden-

ing if a fly came into my classroom, the buzzinggoes through my head like a saw (pain)

John: i was very scared. i just felt like

ARRGGG!!!

Robert: I know that may seem extreme of a

description but it feels like Im being raped. Like I

am being violated.

During these experiences, confusion appeared to reign:

Table 2 The categories and the focused codes within them

Category Focused codes within category

1. Heightened senses

2. Sensory stress 2a. Fear/anger

2b Attack/escape

2c. Avoidance

3. Moderating factors 3a. Single versus many inputs

3b. Low intensity versus high intensity

3c. Order versus chaos

3d. Calm versus stressed

4. The Stress Avalanche

5. Coping strategies 5a. Blocking out other inputs

5b. Dampeners

5c. Creating order

5d. Calming strategies

6. Other people 6a. Source of sensory stress

6b. Negative interactions with others

6c. Positive interactions with others

7. Isolation

8. Self-acceptance

9. Fascination 9a. Pleasurable/calming

9b. Skills/abilities

9c. Long-term pursuits

9d. Distracting


123

Lucy: you know when bubbles come up uncontrol-

lably when you open a bottle of pop, thats what it

feels like in pictures in my head

Adrian described his rushed thought processes as:

what has happened, why it happened or happening

why why why

Attack/Escape In response to the emotional reaction, the

person may try to ignore the sensory experience initially, or

power through with difficulty, but these were the

exceptions:

Q: Are there places you avoid because of your

dislike of plates or balloons?

John: no just power through

Adrian: part of being in the leisure centre is I have

to combat my sensory system all the time Im there

However, mostly these experiences ended up being all

encompassing; more than simply being a distraction, the

fear or anger caused a lot of the participants to drop

everything:

Robert: I shut the blinds and try and ignore them but

I cant. Well, it just stops me doing what I want to do.

I become preoccupied.

Mike: I find I dwell on each noise and it irritates me

and I hear them very loudly.

Mostly the person is overwhelmed by the compulsion to

end the experience by attacking it or escaping. For

instance, two participants described attacking sources of

the sensory stress:

John: if someone touches me when im rocking i will

thrust towards them.

Mike: I used to go mad if a fly came into my

classroom I tried to ignore it, but it sailed towardsme and buzzed past my head. I seized a stack of exam

papers on my desk, rolled them up and went after it.

However, the most common and perhaps most-

straightforward action taken was to escape the source of the

stress. Importantly, it appeared like this wasnt a choice for

the participants, more of an irresistible compulsion:

Rebecca: situations would become too much for me

and Id need to get out

John: it \the sound of balloons[ makes me freakout. i cover my ears. i run like a little girl so afraid

sometimes screaming again covering my ears trying

to make it stop.

Avoidance Escape led into both avoidance of social pla-

ces and rejection from other people, severely restricting

their social sphere (see later: isolation). Lucy explained this

process:

i would make excuses to go outside, say i was hot, it

was quieter in the night in town, but very soon i

would just not go to clubs pubs etc. i felt like i didnt

have a choice it was just to painful to stay.

Moderating Factors

There was not a direct relationship between the adverse

sensory event and the effects it causes. Importantly, some

factors could make the sensory stressors better or worse.

These factors form reciprocal relationships with their polar

opposite, with one pole worsening the experience and the

other lessening the stress. These modified the relationship

between the categories of heightened senses and the

resultant sensory stress.

Low Intensity Versus High Intensity Not all sensory

inputs were necessarily stressful but required reaching a

certain level of intensity to become so.

Rebecca: i dont like sharp noises like alarms

etc.visually i need to have just the right amount oflight if it is too bright it gives me a headache. idont like strong tastes

Single Inputs Versus Multiple Inputs The more inputs

there were, the worse the effect became. One input could

be fine, or just about bearable, but more than one and the

effect was multiplied.

Lucy explained: alot of people talking in a room, or

outsidecars and machinery and birds etc. just onenoise really loud is not as bad.

David: I can listen to loud music, or talk to people,

but not both.

Order Versus Chaos If a situation was predictable and

there was a sense of control about the situation, the expe-

riences were lessened and easier to cope with. However

unpredictability and the feeling of being out of control

conversely made the experiences unmanageable. Predict-

ability helped the person prepare for the coming experi-

ence. Preparation beforehand could therefore be key.

John explained what made his USEs worse:


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i feel very uncomfortable/anxious wherever i go if i

hadnt had time to plan the journey or the journey/

adventure hadnt gone to plan.

James: It is worse if people are moving around a lot

e.g. in busy streets. Not so bad if they are orderly e.g.

at a concert.

Q: predictability and control seem really important

in changing noise from being really troublesome to

manageable then?

Robert: pretty much sums up everything in my life

to be honest.

There was also a reciprocal relationship between order

and calm with them both feeding into each other:

Ruth: When we become stressed everything

becomes more solid and real and permanent, but

when we are calm, we can better accept the changing

state.

Stressed Versus Calm Participants described that the

calmer they felt before the adverse sensory event, the better

they tolerated the sensory stressors, whereas previous

stresses caused them to bubble over quickly and fail to

cope with the inputs.

Ruth: i feel awkward when people touch me and its

ok, but when I am stressed it becomes unbearable

The Stress Avalanche

A major and unfortunate result of the stressed versus calm

moderator comes from the fact that the adverse sensory

events themselves cause stress, which worsens the sensi-

tivities. So a vicious cycle is set up, which Robert named

well as an avalanche effect.

Basically because of the noise of the fan it madeeverything else seem louder One thing getting ontop of another and making the other thing wor-

serthe noise gets too much it just becomes whitenoiseI was always on tenterhooks.

He continues:

my life was a living hell.

Coping Strategies

Some participants had found strategies to cope with their

USEs that used the above moderating factors to make the

heightened senses be less stressful. There appeared to be no

obvious link of particular coping strategies being used for

particular USEs. These techniques were mostly only pres-

ent if found by accident:

James: Regarding the bag, I am used to carrying lots

of things around with me, as I am always worried

about not being prepared for any situation! In fact,

my wife often complains about the amount of stuff I

take with me! I just noticed that the pressure from the

bag is very relaxing.

Ruth: my tai chi teacher was experimenting on me

one evening and i realised that being squeezed is very

comforting

Sometimes the diagnosis helped raise awareness of the

USEs and allowed them to work on strategies:

Ruth: i only really became aware of what was

happening when i got the diagnosis, before I knew I

didnt like it, but thought that it was normalnowim able to work with it, i like it, it fascinates me the

working of the mind

Adrian: i have a file i keep with all my brain stuff so

if i need help or need to help myself i can use this file

and it contains alot of info about me and what i can

do and what others can do to help me.

Dampeners Many participants used strategies to dampen

down sensory experiences, making them less intense, and

thereby help themselves to cope with them e.g. via cov-

ering their ears, using ear plugs, listening to music while

out or wearing dark glasses.

One person dampened down the overwhelming sensory

experiences by distracting herself by counting, while others

took this distraction to the extreme and zoned out to go

somewhere else while in the stressful places:

John \while rocking[: music comes into my head,and patterns, i forget everything. i forget that theres

anything around me

Blocking Out Other Inputs Another method was for the

person to avoid eye contact or close their eyes when being

spoken to in order to reduce the inputs and so avoid being

overloaded. This was despite being aware that this might

have negative social consequences:

Lucy: alot of ntps1 find that rude

James: I can be a bit perturbing for people around

me

1 * ntps: neurotypicals: a commonly-used word by people with

Asperger Syndrome to describe those without an autistic spectrum

disorder.


123

Creating Order Creating order and making life more

predictable was important for the participants in order to

feel calmer and lessen the effects of sensory stressors.

Lucy: If im going somewhere new i need to go look

at it on my own first and get the layout

Q: How can you manage doctors touching you?

Robert: Because I am prepared for it. I know what to

expect when I go into a consultation.

Unfortunately this need for control, led one participant

to be misdiagnosed:

Ruth: Before being diagnosed with AS I was mis-

diagnosed about 10 years ago with OCD. Everything

had to be a certain way or it wasnt correct.

Calming Strategies Some participants found ways to

calm themselves to help them cope:

James: I like heavy pressure, and very often prefer

to carry a heavy bag on my shoulders when walking

around.

Robert: Antti is a little cuddly hedgehog I carry

around with me Hes soft. If Im in a stressfulsituation and need reassurance I can cuddle him.

Robert had also habitually turned to alcohol in the past

in order to calm himself sufficiently and had to drink

\himself[ to sleep.

Other People

Inevitably other people became involved in the partici-

pants USEs and often were perceived to cause the person

problems. They could be a source of sensory stress. The

vast majority of people reacted negatively, while under

certain conditions, some people became sources of

positivity.

Sources of Sensory Stress The participants could struggle

in social situations, as there tends to be an overwhelm-

ing amount of sensory information here. As a result of

their heightened senses, talking to neurotypicals was

beset with difficulties as participants had to try focusing on

body language, speech and emotional cues simulta-

neously, which could overload the person and cause them

stress.

Mike: I think that being with other people is the

biggest cause of stress. I can enjoy their company to

an extent but I like to be able to leave, and I do live

alone.

As seen previously in Avoidance, neurotypicals were

perceived as situating themselves in over-stimulating and

stressful environments such as open-plan offices, shops or

pubs. Here the sources of sensory stress were other people,

chattering, shouting or moving around. This occurred

alongside many participants fears of other people due to

their social skills difficulties.

James: I avoid crowds because I get overwhelmed

with the motion of people moving about too. Ideally,

I would never leave my house!

As they explained, this avoidance could quickly pro-

gress into isolation (see later). Avoidance could be mixed

with a desire to mix with others, with a strong ambivalence

present. Participants therefore appeared torn:

Ruth: Its very strange because mentally i wanted

them to hug me, but physically i couldnt tolerate it. I

think thats the same now

Negative Interactions with Others As will be described

further later, participants were fascinated by certain USEs.

However, this could cause them to be distracted in social

situations, with unfortunate consequences:

James: I notice odd things about their voice and

appearance and can easily become distracted so that I

cannot follow what they are saying.

Lucy: I find it very hard to look at a person and

listenwell impossible if i really want to listen

Sometimes however, it seemed the participants poor

social awareness could save them from noticing others

reactions:

Q: How do you think your pupils see you after epi-

sodes like this? If you had to guess?

David: My clinical psychologist is always asking me

things like that, and I confess that until you said it, it

hadnt occurred to me to wonder what they would

think.

It was seen that neurotypicals reacted to the participants

reactions to sensory stress in a negative way unless certain

factors were present. A lot of the time, other people could

be unsupportive or dismissive:

Q: What did the people below think about the matter?

\regarding their noisy air conditioning unit[Robert: They washed their hands of it. They werent

interested.

Worse than this, neurotypicals could reject the person,

quickly cutting contact. This rejection was often coupled

with the persons avoidance of neurotypicals.


123

Lucy: when they were arranging nights out and i

knew i couldnt go, i felt left out.

Mike: I dont really know what they think after Ive

left, but sometimes people have been surprised.

Theyre generally not angry about it, but I dont often

get invited back.

They could be cruel and mock the person:

John: other PEOPLE, well people dont understand

and can be cruel in life, name calling. if i show im

afraid of something it always gets thrown at me so

hard it drives me to the point of hiding away from the

world, thats been the case most of my life

This process of rejection led to long-term effects on the

person in terms of isolation (see later).

Positive Interactions with Others However, with the right

conditions, neurotypicals could be positive sources of

support and coping strategies. If the neurotypical had

affection for the person with AS, and was aware of the

difficulties the person has, and there was a good level of

communication between them, and after a period of time to

learn, then this could lead to knowledge of how to help.

The diagnosis of AS therefore appears to be key. Many

participants talked about how helpful the diagnosis was for

helping them and others cope with difficult situations:

Robert: Now I have a formal diagnosis of Asper-

gers - and even before when it was suspected - it

helped me and everyone around me realize I had

certain issues and how certain situations must be

handled.

James: It is very reassuring both to me and people

around me if they can see a mechanical explanation

e.g. your brain is wired differently. I like to see it

more as the tolerance you afford foreigners in a dif-

ferent culture.

Lucy poetically explained the need for awareness of

these problems and of Asperger syndrome:

without a care label on the expensive cashmere

jumper your gonna ruin it first time you wash it.

John demonstrated the difference affection makes in

being understanding:

Q: is there anyone in your life now that finds it hard

to understand your fear of noises?

John: the world apart from my loved ones mypartner, my daughter. everyone else may pretend but

dont really understand.

However James explained, even though someone was

very close to him (his wife), awareness was needed:

My wife is very aware of it. She used to think that I

was just being rude or acting weirdly, but now that I

have a diagnosis she at least understands why it

happens, even if it is still very frustrating.

Ruth discussed that awareness and closeness (to her tai

chi teacher) can help communication of the problems and

solutions, with a little help from the Asperger Service

psychologist:

My psychologist mentioned about the squeeze

machine, so I told my tai chi teacher about it and he

started trying to touch me using different amounts of

pressure to find what i could tolerate (as a scientist,

experiments appeal to me) so this has been useful

While time was an important factor, as described by

John when his partner came up with a helpful coping

strategy:

Q: How long until she did that?

John: 4 yrs. whatever i do people just need to persist

with me and people that know me just know its me.

Robert also explained how together he and his mother

came up with certain coping strategies through good old

trial and error.

When others were being helpful and accommodating,

allowances/adaptations to the environment were then

made, coping strategies given and support and reassurance

provided. Adrian summarised this all nicely with regards to

his mother:

she does lots of things sometimes it can be as simple

as getting me to put my head phones in and play

music to ground myself and other times have to get

out and away so she takes me away from where ever I

am, or reassures me im ok and to keep trying to focus.

Her motto is feel the fear and do it anyway

Isolation

As described previously the persons avoidance of stressful

places and rejection from others, led to participants quickly

becoming very socially isolated.

Mike explained the process of escaping from social

situations turning into avoidance and then into isolation:

I would still go there but wouldnt want to stay there

for very long. I would avoid most places that are

loud, as a matter of routine. I spend most time away

from these which is why I said Im not in that posi-

tion now: I rarely socialize.


123

The transition of leaving school could exacerbate this

process as life suddenly became disrupted and unpredict-

able, worsening the sensitivities:

Q: When did you start avoiding places?

Robert: I think it was when I left school. Major

withdrawal, depression, feeling suicidal. Ive come to

realize its because of my condition and the fact there

was no planning for what was a major transition in

my life I think the sensitivities really changedwhen I moved away from home. I think that was the

biggest transitional change because the one important

place I had been used to wasnt my home anymore

and I had to get used to a whole new lot of sounds and

smells.

The loneliness appeared to be part of a life-long process

however that could be in place as early as junior school.

Who rejects who, the person with AS or the neurotyp-

icals, appears to be a chicken and egg scenario. Mike

describes how it starts:

Q: I was curious about this process of falling out of

groups, whether you avoid or they fail to invite you or

both perhaps?

Mike: both, it begins when theyre a little unsure

about me and I dont really try hard.

Before the chicken and egg scenario ended up with

absolute isolation:

Q: Who do you think decides to break off contact

first, you or other people?

Lucy: definitely me..dont want to feel uncomfort-

abledid try on a few occasions to make more of aneffort but its just to hardi understand the lonelinessis of my own making in a world of ntps.

While in this example she is strongly saying she decided

to end things, as has been described before she had also

described a process of stopping being invited out.

Once stuck in there, the hole of isolation was difficult

to return from.

Q: Are there places you can socialise instead?

Lucy: no havent found any so far

Q: So have you been able to break the loneliness a

bit? Is there ever a way back?

Mike: no, no way back.

Positive relationships with people that had been estab-

lished early on could help prevent the isolation being worse

however (e.g. family or friends):

Q: So you started avoiding going out with your

\school[ friends, how did they react?

Rebecca: i cant really remember, they are very

accepting of me as i am, so it wasnt really a big thing

to them. they found alternative ways for us to

socialise i.e by comin to see me or doing things in

their house where id feel more comfortable.

Some participants learnt to accept the loneliness:

Lucy: I dont think you can stop it or make it go

away you just have to accept thats how it is and learn

to live with it.

However a lot of the time, isolation could then lead to

depression. Six participants were prescribed anti-depres-

sants, while one had been in the past. Depression lowered

motivation and worsened the isolation, in another vicious

cycle. For instance, Mike talked about the one social group

he felt he could join: the local Aspies Group:

Mike: It was OK, not too noisy or scary really. I will

go there again, but recently I havent felt like it. We

would play pool or cards or do a quiz.

Q: Would you like to go again?

Mike: Yes,\but[have been too miserable until theCitalopram kicked in again.

Q: So what do you think about not being able to

socialise with people without AS (neurotypicals)?

Adrian :i think it is hell i feel so alone and lonely

Negative self-beliefs could also result, with participants

at various times feeling as though its just them that is

going through these experiences, that theyredifferent or

that they were a freak or an alien.

Again the diagnosis of Asperger syndrome appeared to

be a help. Rebecca describes what the benefits of an earlier

diagnosis would have been:

i think it would have saved a lot of the wondering

whats wrong with me and i could have learnt to cope

with things better sooner

Self Acceptance

Participants described the hardships endured due to sensory

stresses as causing them to begin to change as people. The

difficulties caused an inner resilience, strength and self-

awareness.

Adrian: they \the difficulties[ have gave me abetter understanding of myself and abilitys good and

bad helps me grow stronger for future

John: i hav learned i am so much more in other ways

too. i am who i am. ive had many ups and downs

through life many of them caused by not knowing


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who i was but now i have an understanding of who i

am and i wouldnt take that back knowing that theres

many things i can do that other people cant. im just

John

As can be seen later, pride in their abilities as well as

other peoples admiration and praise of the abilities par-

ticipants had as a result of their USEs, also helped their

self-acceptance.

Fascination for Stimuli

Pleasurable/Calming Aspects of Sensory Experi-

ences Alongside all the above troubles, the heightened

senses could lead to fascinating and pleasurable

experiences.

Mike: I like to look closely at things and see the

details. I enjoy using essential oils for scenting the air

and massage.

James: For craving, I have an intense love of all

kinds of music, which has a very beneficial effect on

my mood. Music is kind of an obsession for me.

They could be just as a powerful experience as the

sensory stressors described above. Participants were sucked

into the sensations and the details; this was calming and

pleasurable. They were compelled to observe them,

spellbound.

John: i dont know how long i was there but i

remember car behind me beeping and people shout-

ing at me as i watched the \traffic[ lights changedover and overI was intrigued.

Skills/Abilities The heightened senses meant some par-

ticipants had remarkable abilities.

Robert: I used to hear the trains going past and they re

5 miles away. I used to hear the cockerel 2 miles

away in the distance in the morning.

Lucy: i recognise and remember alot of smells and

recognise people by the fabric conditioner they use as

much as their face.

The attraction of these stimuli, with the right conditions,

could turn into long-term practical pursuits (see later).

The participants eye for detail was very useful in cer-

tain areas where small mistakes can be critical, with par-

ticipants describing strengths in maths, machines/

computers, languages, or even IQ tests and martial arts as a

result of their fascination with details.

Distracting Aspects of Fascinations However, sensory

fascinations could be double-edged swords. When partici-

pants were drawn into certain details, this was at the

expense of all else; they were stuck in the moment and

zone out, other details could pass them by, which affected

their social awareness.

Lucy: i seem to look at different things in a room or

on tv to other i notice and remember the background

rather that whats going on centre stage.

Mike: I have also missed all sorts of things. I missed

when a girl might have been interested in me once.

Also, things like missing a bus while reading the ads

in the shop window

When mixing with people who dont understand, this

eye for apparently irrelevant details can cause negative

interactions, sometimes with disastrous and terrible

consequences:

Ruth: I used to get beaten up when I was a teenager

and the bullies would always start by saying what

are you staring at? I used to think this was just an

excuse they would use to start a fight, but now I

realise I probably was really staring

Long-Term Pursuits The fascinations and abilities

described before could blossom into longer-term pursuits,

hobbies and careers. Details could be seen that other people

either miss or are probably not able to detect, as seen

previously. However the development of a specific pursuit

seemed to rely on the person having a specific interest

within that sensory modality:

Lucy: words just dont seem to have the way of

grabbing my attention like numbers or symbols did so

didnt pay them any attention reallythey arentconstant they change in meaning

As a result school subjects, hobbies and jobs were

chosen and helped by these fascinations, but specifically in

areas requiring a fine eye/ear/tongue etc. for details:

Mike: \about being a car mechanic[ It has beenuseful to be able to see fine details when fixing

something, or figuring out why something broke, or

spotting a fault appearing before it becomes critical.

Adrian: what made me a great chef was my deter-

mination to be the best and my passion for fair play

team work as i can make flavours and textures of food

just by seeing it and can know what fits with what and

my over sensitive tastes. so i could know really what

food tasted like if you taste olive oil you may taste


123

the oil, i can taste the olive and other fruit oils use to

make it.

However this didnt always happen. Rebecca, despite

having similar abilities, contrasted sharply with Adrian,

above.

Q: Have you been able to use this ability (acute

hearing and heightened senses of smell and taste) in a

practical way e.g. for a job, a skill or a hobby

perhaps?

Rebecca: um no not really

Q: Has there been anything youd thought of youd

like to do with them?

Rebecca: not really.

This was dependent on the person finding a practical

application for their skill (e.g. when comparing Adrian and

Rebecca above), e.g. having positive experiences at in

education and not being overcome by their social diffi-

culties, amongst other practical barriers.

Q: So you were a great chef, how did you find out

you were so good at it?

Adrian: i just analysed all my skills and experiences

and it all pointed to food so then i went to college and

got on really well with a particular chef who found

my talent and helped me win awards

Q: Whats held you back from pursuing your aims

\of being a computing engineer[ ?Mike: There would be several fronts: Economi-cally I have had minimal resources to buy even basic

equipment. University was at the wrong time for me

and I didnt finish there I think that a degree mayhave led to more job offers. I have attended numerous

interviews unsuccessfully. However the degree isnt

really what counts, its probably about finding the

right person for the job and I dont really fit

These long-term pursuits helped gain positive interac-

tions and admiration from others and help self-acceptance:

James: I have always been very strong at grammar,

spelling, flow, and so on. This has helped me obtain

an expert position at work as an editor of others

work, and also helped me write a novel, draft letters

of complaint very quickly, and so on. A lot of this has

to do with sound. I can tell very readily when a

sentence sounds wrong.

Q: What do others say about this ability?

James: They admire it greatly.

Jamess abilities at work helped his manager agree to

adjustments to his working conditions to help him cope

with his sensory stressors:

I work solely from home. I dont have to commute,

which always used to exhaust me. I can wear comfy

clothes, avoid small talk, and listen to pleasant

ambient sounds. My productivity has improved

massively now that I can control the environment I

work in and people often cite me as an example of the

benefits of home working

On the other hand, the pursuits also tended to be unso-

cial ones, worsening participants avoidance, as Lucy light-

heartedly commented:

maybe aspies are not really more intelligent we just

study more so we dont have to socialise!!

Discussion

This study investigated the views and experiences of nine

people, who have AS, regarding their USEs. The partici-

patory approach to the study allowed the realities of par-

ticipants interpersonal worlds to be explored in detail,

guided by the following main research questions:

1. How do unusual sensory experiences affect people

with Asperger syndrome in day to day functioning?

2. What strategies do people with Asperger syndrome

adopt in response to these experiences?

3. What do they think the long-term effects of these

experiences have been?

In relation to these questions therefore, it was seen that

USEs, in the form of heightened senses could cause a

variety of short and long-term effects. In the immediate

term, participants felt fear or anger, wanting to escape or

attack the source of sensory stress. A number of factors

moderated this relationship. After a person has escaped an

overwhelming situation, they then tended to avoid similar

situations in the future.

Other heightened senses could be fascinating, causing

pleasurable or calming sensory experiences and could lead

to certain abilities or skills. However these sensory fasci-

nations could also be distracting, especially when inter-

acting with other people, causing social difficulties.

Other people were often a source of difficulty, whether

causing sensory stress (e.g. by being noisy) or rejecting

participants due to their difficulties with their USEs.

However, if certain conditions were met, they could

become sources of support and coping strategies.

The strategies adopted in response to USEs were mostly

escape, attacking the source of sensory stress or avoidance

of many situations. However, some coping strategies

were found utilising the moderating factors: blocking

out other inputs, dampening the intensities, making their


123

environments more predictable and ordered or using

calming strategies when out.

These experiences did not appear to have changed

throughout their lives, but with time some coping strategies

had been learnt to deal with them instead. In certain cases,

close neurotypicals had also gradually learnt to support the

person.

A major long-term effect of USEs was social isolation

and related depression. This isolation unfortunately

appeared to be absolute and difficult to return from. Some

self-acceptance and strength could result from these diffi-

culties however.

On the plus side, the USEs and associated sensory skills,

if found at school and if the person wasnt held back by

their difficulties socialising, could help lead to long-term

pursuits, such as employment or helping bring about

positive interactions with others and self-acceptance.

Comparison with Previous Studies Regarding USEs

Findings from previous studies about both USEs them-

selves and their relationships with associated problems in

people with ASDs are discussed here. Specifically the most

important and significant themes are discussed in relation

to the indications in the current study as to the nature of

these relationships.

The Nature and Importance of USEs

All participants in the study reported significant USEs. This

would be expected from quantitative studies showing a

very large majority of people with ASD have life-long

USEs (Tomchek and Dunn 2007). For qualitative studies,

similar sensory experiences were described by the partici-

pants in the Cesaroni and Garber (1991), Jones et al. (2003)

and Chamak et al. (2008)s studies. Similar to the current

studys participants, the participants in those studies also

outlined the confusing, stressful and painful nature of a

variety of sensory inputs and the enjoyable nature of others.

A desire to escape the stimuli was also described, as well as

unusual sensory abilities.

However, in contrast to a lot of previous research, the

USEs reported were mostly hyper-sensitivities. As dis-

cussed by Lane et al. (2010), studies have demonstrated

that children with ASD mostly exhibit hypo-sensitivities,

while Lane et al.s study demonstrated 3 clusters of sensory

processing dysfunction in children with ASD, with two of

these clusters having modulation difficulties (i.e. being

both hyper- and hypo-sensitivities) in different sensory

modalities. Foss-Feig et al. (2012) demonstrated correla-

tions in children with ASD and Learning Disability that the

severity of their tactile hypo-sensitivities correlated with

their core autistic symptoms, while hyper-sensitivities did

not. This difference between the current studys partici-

pants and previous research is therefore notable. The

authors suggest that this could be due to:

The small nature of the study created an atypicalsample

It may be easier to self-report hyper-sensitivities andalso easier for others to notice or ask about these rather

than hypo-sensitivities, thereby biasing the data

collected

The nature of USEs may change throughout the life-span as indicated by a meta-analysis by Ben-Sasson

et al. (2009) e.g. Liss et al. (2006), which suggest older

children with ASD demonstrate more seeking and over-

reactive behaviours. The authors are unaware of studies

conducted with adults with HFA/AS specifically,

measuring the prevalence of different forms of USEs.

However some studies have found the opposite, i.e.

younger children are more likely to be hypersensitive

(e.g. Baranek et al. 2007)

In this study, USEs appeared to have a central role in

their lives in a way that is not so for people without an

ASD. The relative importance of these experiences there-

fore partially point towards the conclusions made by

Chamak et al. (2008) who used content analysis to place

sensory sensitivities in a central position alongside emo-

tional dysregulation in causing the autistic triad of

impairments. Similarly, Baker et al. (2008) demonstrated

moderate correlations in children with ASD between the

severity of the USEs and their impairments in daily living

skills, showing how USEs can affect many aspects of a

persons life.

Emotional Functioning

Emotional dysregulation was highlighted as a central

theme of ASD by Chamak et al. (2008). Looking at other

studies, emotional dysregulation was an important theme

for school pupils with ASD in other qualitative studies such

as Humphrey and Lewis (2008) and Carrington and Gra-

ham (2001). In the current study, emotional dysregulation

occurred within an important part in a vicious cycle

(Sensory Avalanche) of stress and sensitivity, as high

levels of stress increased sensitivities, which caused higher

levels of stress and so on (as seen in Fig. 2). As Robert

stated I was always on tenterhooks. This links with

recent discussion by Green and Ben-Sasson (2010) about

how sensory over-responsivity and anxiety may link in

children with ASD.

Baker et al. (2008) found significant correlations

between poorer emotional functioning and USEs in


123

children with ASDs, specifically between tactile, visual and

movement sensitivities and levels of anxiety, but could not

state the direction or nature of this relationship. The results

in the current study therefore highlights how heightened

senses cause anxiety and also described the bi-directional

vicious cycle of the sensory sensitivities and levels of

anxiety.

Previous quantitative studies have highlighted dysfunc-

tional affect regulation in children with ASD. Bronsard

et al. (2010) showed children with ASD were more likely

to exhibit aggression in stressful situations for instance

while Konstantareas and Stewart (2006) showed the diffi-

culties children with ASD have with affect regulation.

Antisocial/Disruptive Behaviours

In Baker et al. (2008) study, significant correlations were

found between tactile and visual sensitivities on the one

hand and antisocial/disruptive behaviours on the other.

Again, Fig. 2 highlights how USEs could trigger off a

chain of events that cause difficulties in social situations.

Participants would often need to escape from situations

they found stressful due to their heightened senses (e.g.

crowded places) and would subsequently avoid them. They

could also attack sources of sensory stress. Both of these

behaviours therefore could be seen as antisocial or

disruptive.

Restricted and Repetitive Behaviours

In Gabriels et al. (2008)s study, a correlation was seen

between the severity of USEs and RRBs, while both Baker

et al. (2008) and Chen et al. (2009) found a link between

USEs and both self-absorbed behaviour and autistic

behaviours. Restricted behaviours include a need for

sameness, routine and order, while repetitive behaviours

can include repeated movements or limited activity inter-

ests. In Fig. 2, it can be seen that these behaviours occur at

many junctures. For instance the sameness, routine and

order was seen as a moderating factor of sensory stress and

a coping strategy that participants used to reduce the

impact of sensory stressors. Repetitive behaviours were a

way of calming oneself to cope with sensory stress (e.g.

Johns rocking) or as a result of their sensory fascinations

(e.g. Mikes sensitivity to and love of visual details). Fas-

cinations were linked to particular skills, which could then

lead to particular long-term pursuits, hobbies and jobs,

something also discussed by Baron-Cohen et al. (2009).

Therefore there were indications Heightened Senses had

a causal role in this point of the triad, albeit in a multitude

of ways. Further studies linking different aspects of USEs

and various RRBs may help strengthen these conclusions.

Comparison with Themes Associated with ASDs

Highlighted in Previous Studies

People with ASDs often have many other problems asso-

ciated with their ASD, which initially may appear unre-

lated to their USEs. Instead the current study gave

indications that relationships did exist.

Importance of Diagnosis of ASD

A study by Punshon et al. (2009) highlighted the life-

changing nature of the diagnosis of ASD in adults, as

participants were relieved to no longer feeling weird and

could understand the difficulties in their past and current

lives, before seeking help. A paper by the National Audit

Office (2009) even highlighted the economic impact fol-

lowing diagnosis of ASD in terms of money savings

through subsequently less use of Social and Mental Health

Services.

In a similar way, in the current study, awareness of

USEs (mostly from diagnosis of ASD) allowed participants

to feel less negative about themselves and their USEs, and

start working on coping strategies. The diagnosis also

helped other peoples understanding and build positive

relationships between participants and those around them.

Further studies following up adults diagnosed with ASD

may elicit other processes and/or strengthen the links found

in this study.

Isolation

Qualitative studies have highlighted the loneliness and

isolation that occurs along with having an ASD (Muller

et al. 2008; Jones and Meldal 2001; Punshon et al. 2009) as

have quantitative studies (Locke et al. 2010; White and

Roberson-Nay 2009), with the severity of isolation corre-

lating with severity of autistic symptoms (Jobe and Wil-

liams White 2007).

In Fig. 2, USEs set off a chain of events, including

escape from social situations and subsequent avoidance,

alongside rejection from other people, which ended with

long-term isolation. So for the current participants, their

USEs were a major contributing factor to their isolation.

Other People

An important factor highlighted in Humphrey and Lewis

(2008) study was the key role of other people in the school

life of someone with an ASD. In their study, good peer

relationships were key to a person feeling included at

school, while poor peer relationships caused a person to

feel very excluded. Similarly in the current study, other

people presented a dichotomy: on the one hand, supporting


123

participants with their USEs as well as providing some

social and self-acceptance for their problems. On the other,

poor relationships with people contributed to rejection,

avoidance and isolation.

Implications for Clinicians and Services

The issues raised in the current study allow some sugges-

tions to be made regarding how services and clinicians can

help the person with ASD.

Increasing Diagnosis

Awareness of USEs was a key part of multiple categories

within the results. It could start the development of coping

strategies and others being helpful (which then helped lead

on to self-acceptance). Clinicians can easily help accelerate

this process through increasing the rates of diagnosis of

ASD. A recent epidemiological study indicated the pro-

portion of adults in England with AS that are un-diagnosed

far outweighs the proportion that have been diagnosed

(Brugha et al. 2011). This may first require an increase in

the awareness of AS amongst professionals in the NHS as

well as the development of specialist AS services, consis-

tent with the UKs governments strategy Fulfilling and

Rewarding Lives (DoH 2010).

Awareness of USEs

Awareness of USEs also needs to increase amongst autism

professionals as stated by Ruth:

it appears to be indicative of asd, i know that it

doesnt come into the diagnostic criteria, but most

people with asd have some sensory issues.

Development of coping strategies that utilised the

moderating factors could be accelerated through education

by services for the person with ASD. Also the vital role that

positive interactions with other people had only occurred

following awareness of and communication about peoples

USEs, e.g. in helping them make their environment more

predictable and ordered.

Many treatments for USEs are available. However, at

the moment convincing evidence (in the form of consistent

positive results from randomised control trials) only exists

for the use of risperidone (McDougle et al. 2005; Miral

et al. 2008) and for massage (Escalona et al. 2001; Piravej

et al. 2009; Silva et al. 2009). Services may therefore like

to consider these treatments for people with ASDs and

USEs that impair their functioning. The RCTs above do not

theorise as to why they are effective, however the model

outlined in this study may explain the effect of these

treatments as risperidone and massage can both have

anxiolytic effects, which may prevent the sensory

avalanche.

Reducing Isolation

As seen in Fig. 2, a common result of USEs for the par-

ticipants was isolation, which could cause intense loneli-

ness and depression. Therefore support with this and

prevention of it is important. Adult support groups for

people with AS have been used to reduce isolation (Jantz

2011) and some of the participants in the current study

were able to use their interests and abilities to gain positive

interactions with others (e.g. through work or activity

groups). Encouragement could be given to join groups that

would not be in overwhelming environments and involved

areas the person was interested in e.g. rambling groups.

Work could be done to prevent the cycle of isolation

occurring. Early intervention in primary schools in the

form of treatment of USEs, support and social integration

may help the person not be excluded at this early stage,

possibly helping the person learn to cope with their USEs

without escaping them and assist social development.

Strengths and Limitations of Research, Including Areas

for Future Research

The study had a number of strengths and limitations that

should be borne in mind when making conclusions. It can

also give avenues for future research.

In this respect the study is the first study to interview

people confirmed to have an ASD explicitly on this

important, central and near-universal feature of ASD.

While Chamak et al. (2008) did interview five people on

the topic, the protocol used was unclear and the conclu-

sions also included a lot of data gathered from autobiog-

raphies written by particularly famous and high-

functioning people with ASD. To the authors knowledge,

no previous study had gone into such detail about the inter-

relating factors involved with USEs, regarding their effects

on the person (internal or social), and those around them as

well as their moderating factors and long-term effects.

Another strength of the study was the use of Instant

Messaging in the interview process. This gained positive

feedback from the majority of the participants, with some

preferring this method to the typical face-to-face interview.

From a personal point of view, it very much felt like

meeting the person on their terms and allowing them to feel

as comfortable as possible. This therefore seems like a very

appropriate option for researchers in the future.

However the sample size was only nine, meaning that

generalising to the population of people with AS is diffi-

cult. This also did not allow important factors such as age

of the participant or the time since diagnosis to be looked at


123

more fully e.g. in the creation of coping strategies or in

self-acceptance. The use of other qualitative methods of

analysis would also have allowed further credibility

checking of the data to occur (Elliott et al. 1999). The

credibility checking with participants did indicate strong

internal validity, alongside these caveats.

As discussed previously, the USEs presented by the

participants contrasted with previous research. Further

research may like to investigate participants experiences

of hypo-sensitivities and the long term effects on their

lives. The current study could have been improved by

assessing the participants USEs more formally and com-

prehensively with a detailed questionnaire of their USEs

e.g. the Sensory Profile (Dunn 1999).

The participants reported mostly sensory hyper-sensi-

tivities, which are thought to represent a significant sub-

population of people with AS (e.g. Kern et al. 2006 or 2 of

the 3 clusters of sensory processing disorders in AS found

in Lane et al. 2010). Therefore the findings here may only

relate to these people with AS and not the under-sensitive/

seeking cluster found in the Lane et al. study.

The model outlined here could be developed through the

use of quantitative studies and larger sample sizes to

expand on the links between categories highlighted by

demonstrating correlations. Longitudinal studies of people

with AS would also help demonstrate the temporal nature

of the processes discussed in this study e.g. discovery of

coping strategies or building of positive supportive rela-

tionships with others. It will be very important to further

investigate the processes occurring that create such isolated

lives for many of the participants in the study to better

inform interventions to prevent or ameliorate it.

As is part of the essential nature of ASDs, the partici-

pants had impaired theory of mind/empathising abilities

and often found it difficult to report on others thoughts and

feelings. While this was useful in itself, richer data

regarding other people could have been gained. Therefore

another study asking those around the person with AS

about the effects of USEs may be helpful in revealing the

others thoughts. This could be with people with negative

relationships with the person with AS, as well as those with

positive ones.

Conclusions

USEs, in the form of Heightened Senses, caused partic-

ipants to have a range of negative and positive experiences,

with subsequently powerful effects on their lives. Negative

experiences could induce fear and cause participants to

escape from stressful environments, which over time could

lead to avoidance of social situations, rejection from peers

and isolation. However some participants had found coping

strategies which utilised factors that moderated the effects

of Heightened Senses. Helpful people were few and posi-

tive interactions only developed following a long process,

requiring awareness, closeness and communication, to

become supportive. Positive USEs were pleasurable and

relaxing. They could lead to particular skills and abilities,

which if identified and nurtured led to hobbies and

occupations.

The study showed the need for services to help people

with AS and those around them in various problem areas,

such as increasing awareness of USEs, increasing rates of

diagnosis of AS and disseminating information on coping

strategies, in order to reduce the long-term negative effects

of USEs, especially isolation.

Acknowledgments Great thanks goes to the participants for theirhonesty and eloquence. Many thanks to Dr Krysia Canvin, Depart-

ment of Psychiatry, University of Oxford, for all her invaluable help

and infectious enthusiasm making the study a Grounded theory one.

Thanks also to Dr Myra Cooper, Oxford Institute of Clinical Psy-

chology, for her advice throughout the process. This paper is based on

research forming part of a doctorate in Clinical Psychology.

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