“booking a holiday somewhere exotic and then realising its just holland”: parent‟s narrative...

8/6/2019 Booking a holiday somewhere exotic and then realising its just Holland: Parents narrative accounts of the experi

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Booking a holiday somewhere exotic and then realising its just Holland:

Parents narrative accounts of the experience of having their child diagnosed with

Autism

6021358

A dissertation submitted to the University of Surrey in partial fulfilment of the

requirements for the degree of BSc (Hons) in Psychology

2011


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Acknowledgements

I would like to thank my supervisor, Emma Williams, for her continued

support and constructive feedback throughout the process also the support of the

Psychology department at the university. I would also like to thank my family and

friends for ongoing encouragement throughout. Furthermore, a big thanks to all the

parents who participated, your contribution is the most appreciated.


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Table of Contents:

Abstract 4

Introduction 5

Stress and quality of life 5

Parental satisfaction and time of diagnosis 6

Parental perceptions and feelings 7

World view and restructuring perceptions 8

Coping 10

Implications for practice 10

The current study including aims and research questions 11

Methodology 14

Design 14Participants 14

Interview Schedule 15

Procedure 16

Ethics 17

Analysis 17

Owning ones perspective 18

Results 19

Figures 21

Diagnosis as life limiting 22

Diagnosis as life enhancing 29

Diagnosis as resource 32

Discussion 36

Implication for practice 39

Limitations and future directions 40

Conclusion 41

References 42

Appendix 1: Interview Schedule 51Appendix 2: Consent form 53

Appendix 3: Information sheet 55

Appendix 4: Risk assessment 57

Appendix 5: Debrief Sheet 59

Appendix 6: Transcript 60

Word Count: 9,993


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Abstract

Diagnosis of Autism is on the increase. There has been research into the

effects of the process of diagnosis on parents using qualitative and quantitative

approaches, however they have tended to focus on during and post the diagnosis,

therefore not capturing the story of the diagnosis process as a whole. This paper

reports a narrative analysis of the accounts of parents before, during and after

diagnosis whose child is on the Autistic spectrum. Three narrative structures were

identified diagnosis as life limiting, diagnosis as resource and diagnosis as life

enhancing. These narrative orientations represent different ways in which parents

made sense of and managed the diagnosis of their child and the impact of this on their

own sense of self. The findings are discussed with reference to the broader current

literature regarding parental experiences of the diagnosis of their child with a lifelong

serious condition and other narrative work on adjustment to disability and illness.


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Introduction

Autism is a life-long developmental disability that is often referred to as an

Autism spectrum disorder (ASD). ASD is characterised by a triad of impairments in

communication, social interaction and social imagination often accompanied by

inflexibility (The National Autistic Society, 2010). According to the current statistics

published by the National Autistic Society 1 in every 100 people in the UK has an

ASD. Recently there has been a dramatic increase in the number of children

diagnosed with ASD resulting in a huge expansion in the related literature, from

finding causes, to treatments and the process of diagnosis (Kabot, Masi & Segal,

2003).

Stress and quality of life

Research suggests that obtaining an ASD diagnosis in the UK can often be a

difficult, stressful and frustrating process, taking years of persistence (Goin-Kochel,

Makintosh & Myers, 2006; Keenan, Dillenburger, Doherty, Byrne & Gallagher, 2009;

Stuart & McGrew, 2009). Having a child with an ASD has been shown to be a

catalyst of greater family stress than other chronic disabilities or diseases such as

cystic fibrosis and Downs Syndrome (Bauma & Schweitzer, 1990; Dabrowska &

Pisula, 2010). Myers, Mackintosh & Goin-Kockel (2009) found that over 70% of

parents who had a child diagnosed with ASD described experiencing stress.

Moreover, Mugno, Ruta, Genitori, DAmigo & Mazzone (2007) also found that such

parents reported significantly more stress and had a reduced quality of life compared

to parents of children diagnosed with mental retardation, cerebral palsy and parents

of typically developing children.


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Parental satisfaction and time of diagnosis

In general evidence suggests that parents experience of the diagnostic process

is not positive (Smith, Chung & Vostanis, 1994). In a national survey of 1295 parents

who had children with an ASD Howlin & Moore (1997) found that on average parents

waited 4 years for a diagnosis their children commonly being around 5-6 years old

when it was finally given. Only 13% of the parents in this study reported being very

satisfied with the process, whereas 49% said they were either not very or not at all

satisfied, a finding later replicated by Howlin & Asgharian (1999) in a national survey

of 770 parents. This is not a situation unique to the UK. According to a study by

Siklos & Kerns (2006) parents in Canada waited an average of 3 years for a final

diagnosis, with 51% reporting dissatisfaction with the process and 80% saying that

they found it stressful.

A more recent study into parental satisfaction was undertaken in Scotland by Brogan

& Knussen (2003). In this 55% of participants (126 parents) stated that they were

quite or very satisfied with the process of diagnosis, a higher satisfaction level than

the earlier study conducted by Howlin & Moore (1997) in which only 23% of Scottish

parents reported being satisfied with the process. More recently still, a study carried

out in Ireland by Langford et al. (2007) found that satisfaction levels had vastly

improved compared to those reported by previous researchers. Focus groups revealed

that on average it had taken no longer than 2.5 years to obtain a diagnosis and that

80% were satisfied with the process. However, their response rate was low (40%) and

therefore the sample was restricted as only 10 parents took part.


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Evidence suggests that in recent years the time taken to obtain a diagnosis may be

decreasing and that consequently children are being diagnosed at a younger age.

Whilst this might explain the increased satisfaction levels reported in some studies

this has not necessarily led to a reduction in stress. In fact Osborne, McHugh,

Saunders & Reed (2008) found that parents who received a diagnosis when their child

was very young expressed greater levels of stress than those whose children were

older. Moreover, those who had a shorter period of time between their first concerns

and receiving their diagnosis also expressed more stress than those with a longer

period of time in between. In summary, in spite of evidence from small scale studies

of improvement inparents experience in some areas of the country it remains the

case that larger more national studies report much lower levels of satisfaction.

Therefore improvements in the speed of diagnosis may not necessarily be

accompanied by reductions in parental stress.

Parental perceptions and feelings

Much research has examined parents experiences of obtaining a diagnosis and

post diagnosis with regard to their perceptions and feelings. Diagnosis has been

viewed as a continuous and longitudinal process, however most emphasis has been

placed on parental experiences post diagnosis (Gray, 2002; Quine & Rutter, 1994).

On receipt of their childs diagnosis parents have commonly reported experiencing a

variety of emotions and feelings ranging from grief to relief (Avdi, Griffen & Brough,

2000; King, Zwaigenbaum, King, Baxter, Rosenbaum & Bates, 2006; Siegal, 1997).

Midence & ONeill (1999) expressed the need for qualitative methods to be utilised

more in addition to more dominant quantitative approaches. They contend that these

would allow for a richer interpretation of the varied accounts of human experience.


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Using grounded theory they explored the experiences of a small number of parents

from North Wales whose child had been diagnosed with an ASD. These parents

reported feeling confused and finding it difficult to cope. They expressed the need for

a better awareness of, and information about, ASD. This finding was reiterated by

Wachtel & Carter (2008) who used the Reaction to diagnosis interview (Pianta &

Matin, 1993) to assess mothers feelings of resolution regarding their childs

diagnosis together with observations of the mothers interaction style with the child.

They found a significant relationship between a supportive engagement with the child

that improved the child cognitively and emotional resolution. This has implications

for parenting style and they suggested early intervention was very important. Coonrod

& Stone (2004) also stated that early intervention was vital not only for the child but

also for alleviating parental concern.

World view and restructuring perceptions

Along with confusion, research suggests that parents often experience negative

changes in self-efficacy and identity (Cachin, 2004; Huws & Jones, 2008; Lin, Tsai &

Change, 2008; Woodgate, Ateah & Secco, 2008). King et al (2006) used the

qualitative key informant approach to analyse the transcripts from 3 focus groups with

parents who had a child with ASD or Downs syndrome. They looked at the world

views and beliefs and they found that raising a child with ASD or Downs Syndrome

led parents to re-examine their beliefs. They saw the positive contributions their child

made and their priorities changed. This showed the restructuring strategies they

employed throughout the process. This cognitive restructuring was also present in a

study undertaken by Tunali & Power (2009) who discovered that the considerable

stress experienced in raising a child with ASD led to mothers redefining what was


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important in the accomplishment of daily tasks. Bayat (2007) specifically examined

the resilience of families of children with ASD. Resilience has been defined as the

ability to withstand hardship and rebound from adversity, becoming more strength-

full and resourceful (Bayat, 2007, p.702). She found that 62% of families classified

themselves as closer and as having an altered positive world view as a result of their

childs ASD diagnosis. ASD families with were regarded as showing higher resilience

and as identifying the positive contributions of disability. Parents have been described

as embracing the paradox of ASD, the paradox being the discrepancy between the

familys current circumstances and their future hopes (Myers et al, 2009, p.682).

The process of diagnosis has been described as a wake-up call with parents

experiencing a mixed response (Nissenbaum, Tollefson & Reese, 2002, p.26). This

was found consistently in a quantitative study of 80 caregivers conducted by Phelps,

McCammon, Wuensch & Golden (2009) who described the process of diagnosis as a

cycle of ups and downs characterised by the co-existence of stress and enrichment.

Mansall & Morris (2004) distributed a postal survey using a qualitative and

quantitative design aiming to examine post diagnosis. Despite many parents

expressing anger and upset about late diagnosis, over three quarters of their sample

said that diagnosis provided feelings of relief and ultimately acceptance. Similarly,

Fleischmann (2004, 2005), using grounded theory to examine websites published on

the internet by parents of children with autism after diagnosis, found that following a

period of time grieving and feeling isolated, parents prepared themselves for action

(2005, p.310), a time they identified as a turning point. This approach allowed them to

express optimism and empower themselves and others, avoiding depression and using

their experiences helpfully and therapeutically (2005, p.310). In a study utilising


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grounded theory Altiere & Von Kluge (2009) report that parents found that the

experience of diagnosis, as well as living with and rearing a child with ASD led to

personal growth.

Coping

Many studies have been conducted into how parents cope with such a

turbulent period of time. Lin et al (2008) used a qualitative design employing in-depth

interviews with Taiwanese parents whose children had recently been diagnosed with

an ASD. They aimed to understand the coping mechanisms employed by these

parents and found three main styles. The first was adjusting by self-change this

related to the parent undergoing cognitive changes, for example they changed their

expectations of their child. The second was developing treatments for the child with

ASD and the third seeking support. Many studies have reflected the benefits of

seeking and receiving social support from other parents who have experience with this

process (Osborne & Reed, 2008; Twoy, Connolly & Novak, 2006). Huws et al (2001)

used grounded theory to analyse e-mail messages sent to a group e-mail by parents.

Parents tended to seek social support to help them cope.

In a quantitative study Dabrowska & Pisula (2010) examined how parents from

Poland coped with stress. They found a significant relationship between coping style

and level of stress. Two distinct styles of coping were identified; problem-orientated

coping, looking to solve the problem at hand, and emotion-orientated coping,

reflecting and thinking about the problem (p.277). They observed that problem-

orientated coping was better for dealing with stress in parents with a child with ASD.


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theory by means of which the researchers attempt to develop theory grounded in

context but without preconceptions. Whilst this is valued, grounded theory does not

allow a structural examination of storied accounts (Glaser & Strauss, 1967). The

current study therefore, is going to use Narrative analysis (NA).

NA has been utilised by a number of studies that have looked at peoples experiences

surrounding a major disruption in their lives (Crossley, 1999; Murray, 2007;

Robinson, 1990). Bury (1982) looked at people living with Rheumatoid Arthritis and

found that the disruption to their lives caused by the condition led participants to

reconstruct their life-stories. A similar result was found by Williams (1984) who

termed this narrative reconstruction. A narrative study looking at cancer patients

found that accounts were structured around three narrative themes that focused on

disruption, a renegotiation of identity and biographical work, which is a

reconstruction of their life-stories that centred around trying to get their lives back on

track (Mathieson & Stam, 1995; Yaskowich & Stam, 2003). Murray (2007)

investigated the narratives of fishermen who had become disabled and therefore could

no longer work in the fishing industry. It identified four primary narrative structures

that represented different orientations to the disablement. These structures allowed the

researchers to describe the different ways in which the fishermen made sense of and

managed the disruption that resulted from their disability and extended their

understanding of its effect on the fishermens lives (Murray, 2007).

In the current study, semi-structured interviews will be utilised in order to capture the

participants stories. People are said to make narratives in order to make sense of and

bring meaning to disruption in their lives, such as a diagnosis (Murray, 2008).


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Method

Design

The current study used semi-structured interviews to generate qualitative data

which was explored using NA. The analytic is based on the work of Gergen & Gergen

(1986) and Murray (2007) allowing the researcher to describe and interpret storied

accounts of the disruption a diagnosis of autism can have to parents lives. It enables

the researcher to explore the parental lived experience in depth, whilst remaining

grounded in the social context.

Participants

A purposive sample was drawn from people the investigator found through a

mutual contact. First contact with them was made through a letter requesting parents

for interview and detailing the nature of the study and the criteria for participation.

This was distributed by a personal mutual contact (gained during the principle

investigators placement year). The investigator received the responses via e-mail.

Once this was gained the investigator requested the parents contact details and sent

the relevant documents, such as the information sheet and consent form to the

potential participant.

A total of four participants were recruited who all had a child formally diagnosed with

an ASD obtained at least two years ago. Two participants children were diagnosed

using the Autism Diagnostic Interview (Lord, Rutter & Le Couteur (1994), one child

was diagnosed using the Autism Diagnostic Interview in conjunction with a C.H.A.T

(a screening tool for identifying autism in toddlers) and one was diagnosed using the

A.S.S.Q (autistic spectrum screening questionnaire). The participants were between


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the ages of 25-35. Two were white British females, one was an Indian female and one

was a white, British male. Three children were diagnosed with low functioning

Autism, two at aged 2 and a half and one age 3. One child was diagnosed with

Aspergers at age 8. All participated voluntarily and were not compensated.

Participants gave full informed consent and their details and any findings have been

kept confidential and anonymous, with all names changed in the analysis and

transcripts. Whilst the process of analysis was taking place transcriptions were kept in

a locked cabinet and files were password protected. Once analysis had taken place the

original transcriptions were transferred to another locked cabinet where they will be

kept for a period of five years.

Once participants had expressed an interest in taking part in the study, having read the

participant letter, they were sent the information sheet which detailed the nature of the

research and specified what their participation would involve. They were asked to

read and sign a consent form before undertaking the interview.

Interview Schedule

Semi-structured interviews were used as they allow a rapport to develop,

enable greater flexibility and the possibility that novel areas of investigation may be

uncovered. The participant can steer and control the interview, allowing them to

express their story. An interview schedule (see Appendix 1) was created in such a

way as to elicit the parents narrative story around the diagnosis with regard to life

before diagnosis, the impact on receipt of the diagnosis and then how it subsequently

affected their lives. Firstly, topic areas that needed to be addressed were identified.

These were pre diagnosis, during diagnosis, post diagnosis and the future. Main


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questions within each area were formulated to gain maximum understanding without

leading the participant. These questions were Tell me about the time immediately

prior to the diagnosis being made?, Tell me about the time immediately after the

diagnosis was made?, Talk to me a little about how you felt a few months (6-12)

post diagnosis?, At the present time, how do you feel about the diagnosis? and

What do you think about your future thoughts/feelings?

Following this, a number of prompts such as, What were your feelings around this

time? and prompts about the time, its difficulties and more positive aspects, others

feelings, what they thought about it and so on were developed. The interviewer could

use these to elicit further information. Prompts were carefully developed in order to

avoid leading the participants into any answers, or causing any distress by asking

about specific sensitive material.

Procedure

Interviews were conducted in the participants home with only the interviewer

and interviewee present in order to avoid interruption and make the participant feel

comfortable. The interviewer appeared relaxed in order to put the participant at ease

and to help build up a rapport. Before the interview the interviewer introduced herself

and asked for some demographic information. The nature of the study was then

reiterated and verbal consent was sought once more. They were reminded of their

right not to answer a question if they did not wish to. Also they were reminded that

they were able to leave at any time and withdraw their data and information from the

study. Each interview was between 45-90 minutes long; depending on the how much

the participant spoke, and was recorded via Dictaphone.


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Ethics

This study was given a favourable ethical opinion by the Faculty of Arts and

Human Sciences ethics committee, University of Surrey. Participants were assured of

their confidentiality and right to withdraw at any time. Participants were also followed

up the day after their interview in order to check on their wellbeing and once again

identify any support services if they needed it.

Analysis

All four interviews were transcribed and each transcript was analysed

separately in order to elicit each participants narrative story (see Appendix 4 for a

transcribed interview). The transcript was read by the researcher a number of times in

order to fully immerse themselves in the participants narrative. There were two main

stages to analysis in accordance with Murrays (2008) description. The first of these is

to familiarise the researcher with the transcript according to structure and content. In

order to do this a summary is made of the beginning, middle and end of each

participants story and key themes and characteristics in the narrative are identified.

Themes were obtained by the researcher recording ideas on the transcripts whilst

reading, these related to the character of the narrative, what function it may serve and

the context it could be linked to. The next stage involved the researcher interpreting

these narratives. Through interpretation in order to connect the narrative with wider

theory, an underlying general temporal form and structure that identifies a sense of

direction at different points in time, with regards to Gergen & Gergens (1986) three

primary structure tool are identified for each narrative. This process will be repeated

for all the transcripts; once this is completed a descriptive orientation will be applied

to each transcript.


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The aim of this analysis was to attempt to recognise variations in the general reactions

of the parents to the diagnosis process and how they attempted to make meaning out

of this disruption and integrate this into their daily lives (Murray, 2007).

Grounded theory was deemed inappropriate as this approach attempts to create theory

that explains the data without the researchers preconceptions. Furthermore

Interpretive Phenomenological Analysis attempts to understand the experience from

the participants lifeworld by systematically analysing data line by line and creating

meaningful categories (Brocki & Weardon, 2006). Neither approach looks at the data

in storied form and therefore does not allow for an examination into its structured and

how it connects to the wider social context, whereas NA can provide such an

examination.

Owning ones perspective

In qualitative research it is important to reflect on the researchers own perceptions as

this has a bearing on the research process. I am a 22 year old white, British female

undergraduate studying for a Bsc. in Applied Psychology and Sociology and therefore

I am quite dissimilar from the participants in this study in age and experience (e.g. no

direct experience of diagnosis) and similar to some by ethnicity and gender. Last year

I completed a placement year working with children with an ASD and I continue to

work part time as an Applied Behavioural Analysis tutor. In this way I have a great

interest in the experiences of those with learning disabilities and their carers.

However, in order to reduce my affect on the narratives my supervisor reviewed the

analysis as she did not have this previous experience


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Results

From the four narratives derived from the interviews three distinct orientations

were identified: diagnosis as life-limiting, diagnosis as resource and diagnosis as life

enhancing. These all focussed on how diagnosis has impacted on the participants and

their families lives and the participants sense of self. In the diagnosis as life-limiting

narrative (2 parents) diagnosis is reported to have had a largely negative impact on

parents lives and self identity (illustrated in figure 1a). They report that receiving the

diagnosis of their child led to enforced and radical change in their sense of self which

they view unfavourably. The trajectory of diagnosis as life limiting begins on an

upward trajectory, with the mothers reporting that they had comfortable lives and

satisfying careers prior to the diagnosis. Diagnosis is described as a turning point

leading to a downward turn in their life trajectory resulting in their having to abandon

their careers in order to take up the role of full-time carers, alongside the experience

of a range of negative, hopeless emotions. After the initial shock of the diagnosis

parents report that their feelings begin to stabilise and not much change has been

detectable since then, although it remains on a low level compared to their lives prior

to the diagnosis.

Both the narrative orientations of diagnosis as resource and diagnosis as life

enhancing are typified by parents view of diagnosis as ultimately having had a

positive impact on their lives. The orientation as life enhancing begins on a stable

trajectory with the parents life being satisfying. Once diagnosis is given, the parent

reports experiencing a number of negative emotions and therefore a drop in trajectory

is perceptible. However after this, diagnosis is ultimately said to bring relief as it felt

better to have something final and in this period of time not much change is traceable


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and the trajectory remains stable but at a lower point than before diagnosis as they

perceive the diagnosis as presenting a difficult challenge. This period is over fairly

quickly compared to the narrative as life limiting. The trajectory then rises as it

appears that the parent comes to view their childs diagnosis as having led to growth

within their family personally and as having provided the opportunity for a new,

satisfying career (illustrated in figure 1b). This is similar to the orientation as

resource; however this begins on a downward trajectory with life being described as

difficult by the parent due to her sons behavioural issues and the struggle to obtain a

diagnosis. Once diagnosed however the trajectory increases slightly due to the relief

and vindication felt on the part of the parent. This is followed by a stabilisation at a

higher level than before diagnosis. Subsequently it increases at a steady rate as the

parent reports the family benefiting from the diagnosis, largely materially, but also

due to some personal growth even in the face of the challenges faced (illustrated in

figure 1c).


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Figures

Time

Figure 1a (life limiting)

Time

Figure 1b (life enhancing)

Diagnosis Diagnosis

Time

Figure 1c (resource)

Diagnosis


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Diagnosis as life limiting: Monica and Debbie

Monica

Monica states that her life before diagnosis was characterised by achievement

as she was about to enrol to do a PhD course and life was materially comfortable. Her

life could therefore be said to be following an upward trajectory. The family moved

over from India before she had her first child, a daughter. Her second child, a son, was

born 3 years later. She began to notice that her sons development was not typical from

very early on and sought medical advice. At the age of 2 and a half her son was

formally diagnosed with low functioning autism. Following this Monica quit her

career to become a full time carer. Her husband also changed career from one with a

lot of travelling to one that enabled him to be at home. Monica reports that their lives

were negatively affected, both financially and socially. She states that she stopped

socialising and has not disclosed the diagnosis to anyone outside the family. She

comments that her main aim is to have her son fit into a normal life so that no one

realise there is anything different about him, including wanting him to attend a

mainstream school against the advice of various educational advisors.

Debbie

Debbie talks of how before diagnosis she had always worked and enjoyed her

career and this was an important part of her identity. Once her son was diagnosed with

low functioning autism at age 2 and a half she became her sons full time carer, a role

she states that she would not have chosen. She talks of the diagnosis as having had a

negative impact on her as she has become overprotective of her son and mistrustful of

others. She compares the diagnosis to having been given a prison sentence and sees

herself as serving time. She also reports that her life has become governed by


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routines, which is contrary to the more spontaneous approach she adopted prior to the

diagnosis.

Monica and her husband had moved from India to England before having their two

children. They both had high aspirations for their son:

we really wanted a son and you know from the culture I come from were like

very into academics, and if we got a son we can send him to Harvard *laughs*

all those expectations change

Before diagnosis both Monica and Debbie had different lives which were career

driven:

M: like you know, earlier we would worry about material possessions and

stuff() you feel whats the point in saving or running after material things

or money () so I had to give up my job and I was very career driven and

what have you () everything had to take a back seat, all the plans were

shelved,

D: I have always worked, 6, 7, days a week, all of my life and I had a career

that I really did enjoy () but that changed dramatically as I suddenly was a

stay at home mum, carer for Andrew () you can never ever have a day off,

and its tiring

It is clear from their discussions the changes diagnosis brought to their lives. It

enforced a change of role from full time career women to full time carers which

impacted enormously and negatively on their self identity.


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When their sons were around 18 months old they both started to notice that they were

not developing as they would have expected:

M: ok when he was about 18 months we thought he wasnt responding to his

name, () he wasnt making sufficient eye contact and he was in his own

world basically,

D:it just didnt instinctively feel right about him, he was, he was quite passive

in some areas social interaction things

Diagnosis was sought and quickly received; Monica describes how it was a

rollercoaster of feelings at first:

Yer, I mean the whole life, its a life-changing experience, so er, we went from

like disbelief to shock to feeling very helpless and then coming to grips with

the situation and er yer it was just like a rollercoaster

The diagnosis has become a central focus point in both of their and their families

lives, and they report feeling unsupported:

M: we were given the diagnosis, given a leaflet, this is what autism is all

about, thank you bye bye, () we couldnt see a future for ourselves, we just

thought *laughs* whats going to happen to Michael, he wont be able to fend

for himself()I mean it is just me, my husband and my daughter and thats

the family and yer our lives have been completely taken over for a while for

Michaels needs

D: so it was a reallyreally depressing diagnosis, without that much

concrete support, in way of support they offered a photocopied booklet on

Autism spectrum about what you can do, () we were left with those whole


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long list of things to explore you know, what might work for Andrew and what

might not, it was a big minefield really

For Monica disclosure has been a big issue; the non disclosure of the diagnosis has

allowed her to distance herself emotionally from it:

we didnt tell the diagnosis to anybody.where we come from not many

people know about Autism and what have you and so for them the only label is

the disability of er mental retardation and obviously we didnt want Michael

to be labelled that way, () no family friends or anybody else know about it

and Im still very uncomfortable about talking about Michaels problem with

other people

Similarly, Debbie distances herself emotionally from the diagnosis through

researching and by focusing on the medical aspects of Autism:

I was curious to know what bits of the brain werent working and which bits

were, and what was happening medically because then I felt that if I knew

what was happening medically then I could really, I could do the best I can to

help my son () I just felt that I needed to equip myself with as much

knowledgeable information on the condition to begin with before I started to

get other peoples opinions

For Monica, there is a great emphasis on passing, not only through the non-disclosure

of the diagnosis but also through her insistence that her son is actually at the same

level as other neuro-typical children his age:

the paediatrician said, that at the time he would not be able to speak very

much and er you know his skills would be very limited but its not that way ()

his language is actually on par with most 5 year olds () so obviously thats

not true and Michael is quite able


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Monica goes on to discuss how the diagnosis is not as significant as they once

thought. In this way she is again placing emphasis on her son fitting in:

I think it is just a label that needs to be given really, () the diagnosis is not

very extensive in that it can not predict how the child will eventually shape up,

() but if proper intervention takes place at the right time, intensive

intervention at that, one on one, then you know things can be reversed

This push for him to fit in with neuro-typical children is clearly challenged by

educational authorities who advise that he would be better off in a special needs

school:

er well the thing is they are pushing to send Michael to a special needs school

which really we are not very keen on as hes not a potential candidate for a

special needs school he is, he really gets on well within the mainstream setting

Despite the negative impact on their lives, Monica still thinks that they cope better by

not disclosing the diagnosis to others as this serves as a constant reminder:

like earlier we would socialise a lot with other people with children and now

we dont want to really, () because we feel bad, ()we havent told very

many people about his diagnosis, I am not very vocal about it I guess that is

one of the coping strategies because especially in the community I come from

if I told people then people would be like of were very sorry to hearthat

In this way she reports that she can move on and not have to be reminded of the

devastation it causes in their lives:

but I just dont want to think about it, I just want to move on, () there could

be a hundred and one reasons, why should I take the blame on myself you

know I had, why he is so different, you know I just dont want to think about it,

I just want to move on


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In contrast, Debbie appears to have accepted the diagnosis and the limitations it brings

for her family:

so Id say that having a diagnosis of autism its a bit, a bit like being given a

sentence really, a prison sentence, its just something you have to go through

and do ()its the correct diagnosis, erm, I feel, erm, a little less.in fantasy

about what I can help Andrew with and what I cant, so I feel a bit more

realistic () just sitting back and doing nothing is not good enough

Both Monica and Debbie report that their lives and identities have changed radically

as a result of their childs diagnosis:

D: so you cant really think selfishly you have always got to put your child

first, so that changes the course of your life completely, you do things that

would normally bore you silly but, that youre just not interested in but you

have to try to remould your brain

M: oh yes, completely, completely, like you know, earlier we would worry

aboutmaterial possessions () you know you feel whats the point in saving

or running after material things or money when in one shot everything just

flies out the window and no matter how much money you have or whatever

you might have a great career or whatever but if his quality of life is not good

Monica describes how her life is limited due to the diagnosis, she no longer socialises

like she did before, particularly within the Indian community:

earlier we would socialise a lot with other people with children and now we

dont want to really, () we are socially isolated in the sense that we dont

socialise much with the Indian community now as much as we would like to


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Debbie feels it has negatively impacted on her husband and despite having another

child in the family with autism she feels disconnected from her family:

Andrews father, had to work and that changed the dynamic completely ()

that in turn meant that he had taken a lesser role with the interaction with

Andrew () the parents, really, didnt help us as much as we would have

liked, because I really wanted to talk with a family member, () they really

didnt want to erm go through the whole Autism thing again

When reflecting on the experience Monica and Debbie cannot pull many positives out

of it:

M: I dont think it was positive at all, at the moment, I still dont have any

positive feelings about it, () my feelings, hmm, erm, I certainly dont feel

very happy about it, it was just, it was just one of the hardest things in our

lives, and Im glad its over

D: having a diagnosis of autism has not been liberating, its not made me a

better person, I feel as if perhaps I was a bit more giving and open to people

before Andrew come along if anything Im more of a closed character now

because I spend my whole time trying to protect Andrew, so Ive become quite

guarded and mistrustful of others so I think if you look at that, its not made me

a better person at all

Both Debbie and Monica maintain that these feelings will persist in the future, this is

depicted in their trajectory (see figure 1a) where it stabilises but at a lower level than

before they obtained the diagnosis:

M: There will still always be a little part of me that always wishes he was like

a typical kid () he can pass as a typical kid ()I dont think I will tell them,


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if they notice something then thats up to them, I will never be comfortable in

telling people,

D: maybe you go through things longer term, on, deep down I think that will

remain for the future, yer, because while Andrew is around well always be

very protective, possibly even over protective erm because of his level of

vulnerability, you just have to be like that

Diagnosis as life enhancing

Carl

Carl reports that prior to the diagnosis of their son both he and his wife had

different careers. He says that they noticed early that something was different with

their youngest son and sought medical advice. Their son was diagnosed at 3 years old

with autism. Carl states that he and his wife felt relief when they got the diagnosis,

following which both parents began completely new and different careers which they

find fulfilling. Carl talks a lot about progress and learning and how they have

maintained a sense of optimism. He comments that the diagnosis continues to provide

motivation for further development.

Although the diagnosis was fairly easy to obtain in the end Carl reports that both he

and his wife had a pragmatic and optimistic approach from the beginning:

I think it took me longer than it took my wife that it almost certainly was

autism. I mean we, we, agreed on that a long time before we got a diagnosis

() but I think there was a reluctance to make the diagnosis, and we were

aware that wed need the diagnosis to get much in the way of support or in the


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way of any support, so we asked for it really, and we basically said we know

what it is, your wanting to call it expressive/receptive communication

disorder, we know that thats a long winded way of calling it autism so please

call it autism

Once they received the diagnosis Carl states that it brought mainly feelings of relief,

they faced the diagnosis as a challenge and began to proactively research:

well I think we knew at that point so paradoxically there was a kind of relief

that wed got the diagnosis and we could get help () we found about verbal

behaviour actually () , I then went to the states to a conference to find out

more, so we were very proactive

Carl suggests that the family accepted the diagnosis fairly quickly and assimilated it

into their lives. This contrasts sharply with Monicas narrative which was

characterised by a lack of acceptance and denial of the diagnosis:

Yer, I think we were much more, well, you come to terms with it, we knew that

it was part of our lives, () we, knew that we had the ability to put things in

place that would help Martin learn, so I think we were both feeling much more

optimistic about the future

Carl reports that the whole family adapted to accommodate the diagnosis. Both he

and his wife completely retrained as Applied Behavioural Analysis consultants and he

feels his other children developed more empathic attitudes:

I mean, the house became like a train station and we had loads of therapists

and supervisors and consultants coming over, and my wife and I both thought

about and then started training, () but it completely took things over, but I

think, although theyre not here, it would be interesting to know the views of

Martins older siblings because it had a big impact on them


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Through this adaptation Carl suggests that his family grew and learnt through the

diagnosis:

yes, erm, so they (siblings) got to meet a much wider, in a way a more

interesting range of adults, then I think they would otherwise have met, erm,

and I also think its had a positive effect on their attitudes to difference and

disability, because they are very unfazed by those things ()I mean hes,

given us a lot, in terms of experiences and erm, I mean again, having all these

people in our live s that wouldnt otherwise be in our lives, its been very

positive for me,

Despite having a mixture of feelings towards the diagnosis even to the present day he

expresses how they place a positive emphasis on the diagnosis through progression:

I sort of swing between being pleased that hes made as much progress as he

has and being disappointed that he hasnt made more, which is entirely down

to me, () sometimes I feel very up about it and sometimes I feel very down

about it ()yep, I mean I think, right at the beginning, it was its a complete

disaster hes lost all of his skills then that moved to my god maybe well be

able to er, erm, recover, him, to use that horrible phrase, to well, its not going

to be that but maybe he can continue to make lots of progress, which is sort of

where I am now, ()weve kind of settled into a place of where hes going to

continue to make progress, it might be slower progress then my other children

will make, but hell continue to make progress

Despite the up and downs of life with a diagnosis Carl still draws on how the

diagnosis has brought interesting and fulfilling aspects to their lives. This is in sharp

contrast to the life limiting narratives:


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I think I realised that erm, I didnt need him to be different for me to be happy

() you know I changed my career because of Martin,() erm I socialise with

different people, I work with different people () (the diagnosis process) erm,

life changing, erm, trauma er well traumatic, and at times exciting and

interesting

Diagnosis as resource

Sandra

Sandra talks of how life has always been busy. She reports that she noticed

early on that her son was different. Her husband was not supportive in seeking the

diagnosis but she persisted. She talks of her desperation with the lack of support in her

quest for diagnosis. When her son eventually received a diagnosis of Aspergers

syndrome she states that this brought relief. Her narrative focuses mainly on

discussing how the diagnosis provided a gateway to various resources and was

therefore a beneficial tool that has helped her cope.

As Sandras son has Aspergers syndrome this was much harder to detect and when

she approached the school they were not supportive:

when I first spoke to school about it, they were like no, no theres no problem,

yes hes behaving badly, ()so they felt that I needed parenting skills and said

oh well well get the school nurse to have a chat with you, and I said ok, and I

mean at this point I didnt care, I thought as long as I can get some help

Despite coming to the conclusion herself that her son had Aspergers she knew it

would be a lengthy process and one that at first she faced alone:


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The diagnosis not only brought material resource but the families expectations altered

and Sandra reports that daily life became easier:

I became more in tune, Iwouldnt say the understanding of the diagnosis had

changed it was more understanding the condition, () well I guess it simply

goes back to realising that aspirations you might have had, have been taken

away and you need to relook at how things are going to be with sort of this

responsibility () we just planned better for everyday

With this change in expectations Sandra felt that their familys focus on life changed

and diagnosis would not have been given without her persistence:

our focus on life is different after the diagnosis,(...)I think, if I hadnt pursued

the diagnosis, because I could have just thought Peters different and has

difficulties, lets just treat him how he is, but no going any further, but it was

obviously my choice, I was very driven, I felt we needed a diagnosis, to

support him,

In the face of the diagnosis being a difficult time and living with Aspergers being a

challenge she feels that it was the right thing to do:

I feel its definitely absolutely the right thing to do, erm, but even having a

diagnosis doesnt automatically mean that you get everything that you would

like or that even everything you would need, so its still frustrating

Despite the frustration felt she feels that in fact her family has benefitted from the

experience:

Peters next brother has adopted quite a caring attitude towards him ()Ive

just seen an odd little look between them at times so, that makes me think, he


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will lean on her and she will be happy to be there, erm, which I think is very

similar to his brother

Furthermore, unlike Monica and Debbie she feels that the diagnosis is not negative for

her son and has led to some personal growth:

there are benefits to how Peter is, he is different and actually there are

positives to being different, I realise he could be on the spectrum and be a

whole lot worse and our life would be completely different, I learnt a lot, and

hopefully and thats made me slightly better


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Discussion

The disruption in a parents life of their child receiving a diagnosis on the

autism spectrum has clearly been demonstrated. The parents in this study experienced

a change to their sense of self. For one this meant a whole new career and for others

it meant a change in their role from career driven to full time carer (King et al, 2006).

This change in sense of self and the diagnosis as a whole had a large impact on the

feelings of all the parents interviewed which led to them employing differing coping

strategies. At times the process was described as a rollercoaster of emotion with many

persistent ups and downs, a recurrent theme also found in previous literature (Mansell

& Morris, 2004; Phelps et al, 2009; Rogers, 2007).

Often reflected in the accounts was a changed sense of self, either negatively or

positively this disruption seemed to influence the parents concept of themselves

afterwards (Cachin, 2004; Huws & Jones, 2008; Lin, Tsai & Change, 2008;

Woodgate, Ateah & Secco, 2008). Once they received the diagnosis parents in this

study employed different coping strategies that enabled them to try to deal with this

changed identity. For all the parents this often involved researching the area. One

parent researched purely with regard to facts. In this way she could medicalise the

condition and distance herself from the actual implications to life with a diagnosis and

new identity as a full time carer. The other three parents often engaged in researching

other parents narratives. Frequently researching was initiated through a lack of

support the parents felt particularly from authorities. This kind of coping was also

found in a Taiwanese sample along with coping by making cognitive adaptations (Lin

et al, 2008). This is something that the parent whose narrative was characterised by

life enhancement clearly demonstrated; he often lowered his expectations for his

child. This perhaps affected his new positive sense of self trajectory (life enhancing),


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as he could see the positives out of the diagnosis due to this cognitive adjustment, this

is a recurrent finding in the previous literature (King et al, 2006; Tunali & Power,

2009). In fact, Bayat (2007) demonstrated how parents who showed resilience found

themselves closer as a result of the diagnosis and they had a more positive outlook on

life. This is similar to the two progressive narrative accounts presented here. They

reflected a positive attitude towards the diagnosis following a period of adjustment

which they described as bringing about positive change, perhaps these families could

be considered more resilient than others.

The three narrative orientations identified in the parents accounts can be connected

with the narrative structures such as those described by Murray (2007) in his study of

fish harvesters and their disablement. He found that fishermen who had become

disabled and therefore could no longer work in the fishing industry found their

identities challenged. Some reacted similarly to the narrative orientation described as

life limiting. Often they felt out of place and unsure of what to do next, their story was

regularly of loss and isolation. However, he also found that some were able to use this

disruption as an opportunity to explore other avenues, such as different employment.

This is similar to parents whose narratives were diagnosis as life enhancing and

diagnosis as resource, which were characterised by a sense of optimism and a positive

outlook on the future. This has also been found by other researchers who have found

that some parents find positive meaning in the challenge of autism, described by

Myers et al (2009, p.682) as embracing the paradox.

The three narrative orientations identified clearly suggest that it is important to take

account of the parents sense of self and of their lives prior to diagnosis if we are to


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fully understand and support their adaptation to it. Each orientation describes how

parents make sense of and manage this disruption and can be clearly connected to the

three-fold narrative structure identified by Gergen & Gergen (1986). The life-limiting

narratives identified were clearly regressive, their stories were characterised by a

lack of acceptance, a negative tone and a downward trajectory. Despite the regressive

nature of diagnosis as life-limiting it did also show aspects of achieving stability some

years after the diagnosis. Whilst there was evidence of negative beliefs these did not

seem to increase towards the end of the story instead staying on a steady course.

Finally diagnosis as a resource and life enhancing were both progressive, both could

identify positive changes as a result of the diagnosis. Interestingly both the parents of

these progressive accounts had older children and had received their diagnoses later

than the others. Further research is needed to investigate whether this may be

associated with the trajectories of their stories. An important aspect of such narrative

orientations is that they are not static and fixed but are temporal, such that different

orientations may be adopted at different points in a persons life after the

disruptive/traumatic event as they adapt/respond to it. Ezzy (2000) has suggested that

the temporal nature of the narratives is important. It may be that parents experience a

range of these orientations not necessarily in linear form but dependent on the time

and context of events within the process of diagnosis. Those at the beginning of the

process maybe more likely to adopt a life limiting narrative, they then may move

through narratives as they do or do not receive support and information. Perhaps this

could lead to more acceptance and therefore more reflection which could be framed

positively and allow for personal growth.


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Murray (2007) has suggested that age is an important factor in determining narrative

structure with the finding that older fishermen were more able to accept their

disability than younger. Furthermore, diagnosis as resource was found in the narrative

of a parent whose child had been diagnosed with Aspergers (not associated with

impairments in intellectual level) whereas other parents interviewed all had children

with low functioning Autism. It may be that this affects how parents experience the

diagnosis and the effect it has on their sense of self, emotions and coping. Further

research is needed to investigate this. Cultural context is also an important factor in

this study and is something which also merits further investigation. A parent whose

orientation is characterised by life-limiting aspects and a regressive structure belonged

to the Indian community; a community that she states is much less knowledgeable and

accepting of a condition such as Autism.

Implications of findings

The findings from this research suggest, as past literature has also found, that

parents engage in a large amount of researching following a diagnosis in order to aid

coping but also because adequate support does not seem to be forthcoming from

authorities (Keenan et al, 2009; Osbourne & Reed, 2008). Further support is needed

after diagnosis, parents often stated that preferably support which offered a clear

structured path with lucid choices and this was reflected in Truslers (2008)

conclusion that information need to be clear, coherent and consistent. The

implications of these findings if they were borne out by further research, is that

service providers could supply anticipatory guidance for parents whose sense of self

may be negatively affected and in this way help them to maximise the positive in such


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an experience, for example helping them make the cognitive adaptations needed in

order to appreciate smaller progression with their child.

Limitations and future directions

The current research needs to be considered critically. The sample utilised was

made up of only four participants, therefore findings such as the narrative orientations

discussed can not be reliably generalised to other parental experience of the process of

diagnosis. Further to this, the sample contained parents whose children could be

placed anywhere on the Autism spectrum and therefore experiences could be different

from each other. Further, results need to be viewed tentatively as interpretation by the

researcher will have influenced greatly on the validity of the results due to aspects of

the researcher. For example as the researcher had previous interest and experience

within this area their viewpoints could have framed findings in a way that they

preferred and which aligned with their previous understandings. Moreover, accounts

given were retrospective and parents were not recruited from wide range of

backgrounds.

However, despite these considerations it would be expected that other parents

encountering a diagnosis of ASD and other developmental conditions may have

similar experiences. Further research could extend the sample of the current study by

size, demographic variability and different developmental conditions such as Downs

syndrome and see if similar or different results are yielded. Furthermore, use of other

methodologies could be employed. As the current study relied solely on a qualitative

data, a quantitative method could add breadth to this issue. For example using a

questionnaire with Likert-type scales such as that used by Twoy et al (2007) to


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examine specifically the changes parents experienced with their sense of self, scales

could be developed from these findings and other similar studies. The use of a multi-

methodological approach could therefore lend itself to results that can be generalised

and representative of the population examined.

Conclusions

Evidently parents experience a range of reactions to receiving a diagnosis of

autism in the family. All parents described the impact of the diagnosis and how their

identities were shaped by this experience. The different narrative orientations reflect

the diversity of perceptions and feelings parents have and how they adjust to this

disruption. These findings, if supported by further research, have potential

implications for professionals working with parents in this field.


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Appendix 1: Interview Schedule

Tell me about the time immediately prior to the diagnosis being made?

o When did you first have your concerns? And what were these?o What brought you to seek a diagnosis?o How easy/difficult was it to obtain a diagnosis?o How did you feel? What did you think?o How did other members of your family feel/think?o Did you feel supported? If so, how? If not why not, and what support

would you have liked?

Tell me about the diagnosis itself?

o Who made the diagnosis? Who was present? Where did it take place?Describe the process of diagnosis itself? What actually happened?

Tell me about the time immediately after the diagnosis was made?

o What thoughts/feelings did you have?o What thought/feelings did other family members have?o What was especially difficult about this time?o Was there anything that made this time easier? If so, what?o Did you feel supported? If so, how? If not why not, and what support

would you have liked?

Talk to me a little about how you felt a few months (around 6-12) months post

diagnosis?

o Had your understanding about the diagnosis changed? And if so whendo you think this change took place and why?

o How did you feel about the diagnosis? Had your feelings changed? Ifso, how & when? What brought this change about?

o How did the diagnosis impact on your life at this time?o How did it impact on the lives of other family members?o What forms of support did you receive?o What kind of interaction with support services did you have? What

would you have liked to have had?

At the present time, how do you feel about the diagnosis?

o What are your thoughts/feelings about it now?o Have these changed from what you have reported previously. If so

how, when and why?

o Have other family members thoughts/feelings changed do you think?o How does it impact on your life now? Has this changed?


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o How are your relationships with support now as opposed to then?What do you think about your future thoughts/feelings?

o Do you have anxieties about the future?o What do you want to happen?


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Appendix 2: Consent Form

Ethics Committee

Participant Consent form:

I the undersigned voluntarily agree to take part in the study on understanding theexperiences of parents throughout the diagnostic process of their childs Autism

using interpretative phenomenological analysis

I have read and understood the Information Sheet provided. I have been given a

full explanation by the investigators of the nature, purpose, location and likelyduration of the study, and of what I will be expected to do. I have been advised

about potential distress or anxiety which may result. I have been given the

opportunity to ask questions on all aspects of the study and have understood the

advice and information given as a result.

I agree to comply with any instruction given to me during the study and to co-operate fully with the investigators. I shall inform them immediately if I suffer

any deterioration of any kind in my health or well-being, or experience any

unexpected or unusual symptoms.

I understand that all personal data relating to volunteers is held and processed inthe strictest confidence, and in accordance with the Data Protection Act (1998). I

agree that I will not seek to restrict the use of the results of the study on the

understanding that my anonymity is preserved. All transcripts of interviews will

be confidential.

I understand that I am free to withdraw from the study at any time without

needing to justify my decision and without prejudice.

I understand that in the event of my suffering a significant and enduring injury

(including illness or disease) as a direct result of my participation in the study,compensation will be paid to me by the University, subject to certain provisos and

limitations. The amount of compensation will be appropriate to the nature,

severity and persistence of the injury and will, in general terms, be consistent with

the amount of damages commonly awarded for similar injury by an English court

in cases where the liability has been admitted

I confirm that I have read and understood the above and freely consent to

participating in this study. I have been given adequate time to consider my

participation and agree to comply with the instructions and restrictions of the

study.


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Name of volunteer (BLOCK CAPITALS) ........................................................

Signed ........................................................

Date ......................................

In the presence of (name of witness in BLOCK CAPITALS) .............................................

Signed ..................................................

Date ......................................

Name of researcher/person taking consent (BLOCK CAPITALS) ...............................................

Signed ........................................................

Date ......................................


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Appendix 3: Information sheet

The purpose of this project is as a psychology dissertation in order to complete my

degree in Applied Psychology and Sociology. Its aims are to understand the

experiences parents with a child on the autism spectrum have throughout the process

of diagnosis. It also intends to examine if and how these experiences may change and

the effect time has on the feelings and thoughts at each stage of the diagnostic

process.

This research is being supervised by Dr Emma Williams of the Department of

Psychology at the University of Surrey. If you need to contact Dr Williams about

anything to do with this research, she can be reached [email protected]

and/or 01483 689434 Ext. 6969. The research has received a favourable ethical

opinion from the Ethics Committee of the Faculty of Arts and Human Sciences at the

University of Surrey.

As a participant, you will be interviewed at length about these experiences. The

interviewer will have a set schedule of topics to cover for example, the period before

diagnosis, your feelings about this and how these may have changed over time. In

addition questions will be asked about the period of time when you obtained the

diagnosis, how you felt and what you thought. And finally questions will ask about

the time post diagnosis and the future as you see it now. However you, as the

interviewee, are encouraged to speak freely about these experiences. There is no

obligation to answer the questions; you have the right to refuse to answer a question at

any time. The topics covered are likely to be sensitive areas that may cause distress

and/or anxiety; therefore it is important that you bear this in mind when you are
mailto:[email protected]:[email protected]:[email protected]:[email protected]


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deciding whether or not to participate. However, evidence has shown that talking

through experiences can be helpful.

The interview will take place in a location that suits you and will last between 45 to

90 minutes long, depending on how much you have to say. The interview will be

recorded, transcribed and analysed, together with a number of other interviews.

Throughout the process a pseudonym will be used. No personal or identifiable

information will be used in the final report or during the process of analysis. This is to

retain your complete confidentiality. Once your transcript has been analysed, the tape

recording will be destroyed. The transcript will be kept in my supervisors locked

filing cabinet for a period of 5 years. The only people who will have access or indeed

see/hear your transcript and recording will be my supervisor, Dr Emma Williams and

I.

In order to take part you will be required to sign a consent form meaning that you

have understood what the study is about, its objectives, your role in it and that you are

happy for your information to be used in the final report. You are able to withdraw

from the process at any time and your information will then not be used. Please

contact me to ask any questions regarding any part of the project at any time.

Thank you for taking the time to read this information sheet.


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Appendix 4: Risk Assessment

Potential

Hazard

Who is at risk? Existing Control

Measures

Preventative

Measures

Who will be

Responsible?

Distress/anxiety

caused by sensitivequestions duringinterviews

All participants and

researchers

Information sheet about the

interviews topic areas and

the potential risk given to allparticipants.Consent form read and

signed before interviews take

place

Awareness of these risks by participants and

investigators. Information sheet prior to

interview, follow up phone call afterinterview to check on the participants well-being and advise on possible support sources,

for example the National autistic society

phone number and email address if distress is

experienced.

Furthering this, I have worked with the

children during the placement year and

therefore they know me as a tutor, but this

does not mean know them personally. There

has also been a reasonable gap of timebetween diagnosis and interview

consequently they have had time to come to

terms with it. There is also evidence to show

that talking about such experiences has a

cathartic effect (Fleischmann, 2004).

All investigators.

Confidentiality

All participants All participants will be

informed of the interviews

being recorded. Allinterviewees personal

details kept out of analysis.

Pseudonyms used throughout

All recordings will be destroyed once used.

The transcripts will be kept in a locked filing

cabinet for 5 years. During the process of

transcription and analysis any d

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