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

Parent‟s 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 14
Participants 14
Interview Schedule 15
Procedure 16
Ethics 17
Analysis 17
Owning one‟s 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 51

Appendix 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, D‟Amigo & 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 in parents‟ 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 child‟s 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 & O‟Neill (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 child‟s

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

child‟s 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

family‟s 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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Implications for practice

Osborne & Reed (2008) concluded on the basis of focus group data that after

initial diagnosis a period of time is needed to allow parent/s to consolidate and adapt

to information. Once time has passed perceptions tend to change, then parents

expressed the need for more information and for support to be in place, either one to

one counselling or group support. Furthermore, Altiere & Von Kluge (2009) found

that researching by the parents (such as online) is essential for their coping and

clinicians need to take into account the parents expertise.

The current study

From the research in this area it is clear that parents raising children diagnosed

with ASD commonly experience more stress and a lower quality of life. In spite of

evidence of recent improvements and smaller pockets of good practice, dissatisfaction

with diagnosis is still experienced by many parents. Despite the negative

repercussions, however, research also indicates that diagnosis can often provide a

turning point for parents in which adaption and coping takes place. It has often been

the case that whilst research has focussed on the parents experiences during and post

diagnosis, it has not often explored their perceptions about themselves, their lives and

their child prior to diagnosis. It therefore does not capture the whole process or story

in terms of the impact that this event has had on their lives and sense of themselves.

The principle aim of the current study is to explore the experiences of parents before,

during and after their child received a diagnosis on the autism spectrum. The parent‟s

narratives with an emphasis on the trajectory of their thoughts, feelings and

perceptions will be examined in order to seek a more detailed understanding of it and

to track changes in their story. Most qualitative literature in this area uses grounded
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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 people‟s 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 fishermen‟s lives (Murray, 2007).

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

participant‟s 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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Gergen & Gergen (1986, p.27) state that people actively construct narratives; these

social constructions are then developed in everyday social interactions and serve to

make sense of the world. They also state that narratives have a certain structure that is

directed towards a particular goal state. They have identified three primary types of

narrative structure. The first is progressive this structure shows a clear positive

movement forwards. The second is regressive and is the reverse of progressive,

whilst the final type is labelled stable where little change is detectable (Murray,

2008). NA has been selected as the most appropriate research method as it allows the

researcher to analyse the parent‟s narrative thematically and structurally as they

attempt to manage and make sense of the impact of the diagnosis (Murray, 2007).

Information about this has the potential to inform the support put in place for parents

whose child/children receive such a diagnosis. The aim of this study is to explore the

narrative accounts of parents with regard to pre, during and post their child receiving

a diagnosis of ASD, exploring how they manage and make sense of such a disruption

on their lives.
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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 Murray‟s (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

participant‟s 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 & Gergen‟s (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 researcher‟s 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

Diagnosis Diagnosis

Time Time

Figure 1a (life limiting) Figure 1b (life enhancing)

Diagnosis

Time

Figure 1c (resource)
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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
 - 23 -

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 we’re 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 what’s 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 wasn’t responding to his

name, (…) he wasn’t making sufficient eye contact and he was in his own

world basically,

D: it just didn’t 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, it’s 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 couldn’t see a future for ourselves, we just

thought *laughs* whats going to happen to Michael, he won’t be able to fend

for himself (…)I mean it is just me, my husband and my daughter and that’s

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

Michael’s needs

D: so it was a really……really 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
 - 25 -

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 didn’t 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 didn’t want Michael

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

and I’m still very uncomfortable about talking about Michael’s 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 weren’t 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 that’s

not true and Michael is quite able

 - 26 -

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 he’s 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 don’t want to really, (…) because we feel bad, (…) we haven’t 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 we’re very sorry to hear that

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 don’t 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 don’t want to think about it,

I just want to move on

 - 27 -

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

for her family:

so I’d say that having a diagnosis of autism it’s a bit, a bit like being given a

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

and do (…) it’s the correct diagnosis, erm, I feel, erm, a little less….in fantasy

about what I can help Andrew with and what I can’t, 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 child‟s diagnosis:

D: so you can’t 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 you’re 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

about material possessions (…) you know you feel what’s 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

don’t want to really, (…) we are socially isolated in the sense that we don’t

socialise much with the Indian community now as much as we would like to
 - 28 -

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, didn’t help us as much as we would have

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

didn’t 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 don’t think it was positive at all, at the moment, I still don’t have any

positive feelings about it, (…) my feelings, hmm, erm, I certainly don’t feel

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

lives, and I’m 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 I’m more of a closed character now

because I spend my whole time trying to protect Andrew, so I’ve 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 don’t think I will tell them,
 - 29 -

if they notice something then that’s 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 we’ll 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 we’d need the diagnosis to get much in the way of support or in the
 - 30 -

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 that’s 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 we’d 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 they’re not here, it would be interesting to know the views of

Martin’s older siblings because it had a big impact on them

 - 31 -

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 he’s,

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

people in our lives that wouldn’t 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 he’s made as much progress as he

has and being disappointed that he hasn’t 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 it’s a complete

disaster he’s lost all of his skills then that moved to my god maybe we’ll 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, (…) we’ve kind of settled into a place of where he’s going to

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

will make, but he’ll 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:

 - 32 -

I think I realised that erm, I didn’t 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 Asperger‟s 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 there’s no problem,

yes he’s behaving badly, (…)so they felt that I needed parenting skills and said

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

mean at this point I didn’t 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:
 - 33 -

I felt, frustrated obviously, it was going to be a long process, I kind of knew

where we were going but had to go through the steps, so it was like god we’ve

got a lot of time to pass here before we get what we need, (…) so I was just,

more than anything, I was just frustrated that I was doing it all on my own

She reached desperation point with the lack of support but pushed on:

erm my first problem was that it was in May and school had been invited

around about February, (…) they wrote back very quickly and said no sorry

no one is available (…) I sat outside in the corridor in the paediatric

department next to the SENCO who sat and told me that erm, many of the staff

had discussed this situation and that they had all agreed that there was

nothing wrong with Peter, he was just a very naughty little boy who laughed

when you told him off, and even if I got any form of diagnosis that afternoon it

wasn’t really going to change anything at school, so that was really hard

Eventually the hard work seemed to pay off and she received a diagnosis and some

support which brought mixed feelings but also rallied her to now get the resources she

was intent on receiving:

erm the speech and language said clearly you have got a problem and I would

normally discharge at this point but I will come into school and run some

sessions for staff (…)I felt vindicated for all the noises I had been making,

erm, so that was a huge relief, erm, mixed with erm oh god it is real we really

have got this to deal with, life is going to be different, but then, kind of knuckle

down and lets go through this folder that I’ve been given and lets get in touch

with as many people as possible and get what support I can, I feel I need and

what would be beneficial

 - 34 -

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, I wouldn’t 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 family‟s 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 hadn’t 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 doesn’t 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:

Peter’s next brother has adopted quite a caring attitude towards him (…) I’ve

just seen an odd little look between them at times so, that makes me think, he
 - 35 -

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 that’s made me slightly better

 - 36 -

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),
 - 37 -

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 parent‟s 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
 - 38 -

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.

 - 39 -

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 Trusler‟s (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
 - 40 -

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

 - 41 -

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.

 - 42 -

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 - 51 -

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 when

do you think this change took place and why?
o How did you feel about the diagnosis? Had your feelings changed? If
so, 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?
 - 52 -

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?
 - 53 -

Appendix 2: Consent Form

Ethics Committee

Participant Consent form:

I the undersigned voluntarily agree to take part in the study on understanding the
experiences of parents throughout the diagnostic process of their child‟s 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 likely
duration 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 in
the 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.
 - 54 -

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 ......................................
 - 55 -

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 at E.I.Williams@surrey.ac.uk

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
 - 56 -

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 supervisor‟s 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.
 - 57 -

Appendix 4: Risk Assessment

Potential Who is at risk? Existing Control Preventative Who will be

Hazard Measures Measures Responsible?
Information sheet about the Awareness of these risks by participants and All investigators.
Distress/anxiety All participants and interviews topic areas and investigators. Information sheet prior to
caused by sensitive researchers the potential risk given to all
interview, follow up phone call after
questions during participants. interview to check on the participant‟s well-
interviews Consent form read and being and advise on possible support sources,
signed before interviews take for example the National autistic society
place 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 time
between 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 participants All participants will be All recordings will be destroyed once used.
Confidentiality informed of the interviews The transcripts will be kept in a locked filing All investigators.
being recorded. All cabinet for 5 years. During the process of
interviewee‟s personal transcription and analysis any data on the
details kept out of analysis. computer will be password protected. The
Pseudonyms used throughout transcripts will also be stored in a locked
 - 58 -

interview and then analysis. cabinet in my workspace at home during the

time the analysis is being conducted.

All participants and All participants will
Consent researchers complete a consent form
once they have read the
information sheet and agreed
to the terms of consent.
All participants will be asked before the
interview if they still consent (verbal consent) All investigators.
and they will be informed (verbally and on
the information sheet) that they are able to
withdraw from proceeding at any point during
the investigation.

Researchers will follow the Awareness of the risks. All Investigators.

Universities guidelines and
Security will tell someone where
Researchers they are going, when they
are going and for how long,
and will call them when
they leave. Further to this in
the absence of receiving a
call after the specified time
the person specified to
receive a call will call the
interviewer to check on
their security.
 - 59 -

Appendix 5: Debrief Form

Thank you for agreeing to be interviewed and taking part in this study. The aim of this

study aim is to explore the experiences of parents before, during and after their child

received a diagnosis on the autism spectrum. The parent‟s experiences of this process

with regard to their thoughts, feelings and perceptions will be examined in order to

seek a more detailed understanding of it and any changes that may take place over

time. Your information will be vital to understanding the process parents go through

with regard to the diagnosis of their child‟s Autism. Information such as that obtained

from your interview and others has the potential to inform the kinds of support put in

place for parents whose child/children receive such a diagnosis.

As stated before, the interviewer will be calling a day after your interview to debrief

you verbally and check on your wellbeing. However, if any distress has been

experienced and you feel you need support please refer to this information. The

National Autistic Society has a helpline: 0845 070 4004. It is open 10.00am – 4.00pm

Monday to Friday. Alternatively you can visit their website:

http://www.autism.org.uk/news-and-events/about-the-nas/contact-us.aspx. They also

have an e-mail support service available accessible via the website.

If you would like to read a copy of the final report that quantifies the findings then

please leave your contact details with the interviewer or contact Dr Emma Williams

on E.I.Williams@surrey.ac.uk and/or 01483 689434 Ext. 6969.

Thank you once again.

Sarah Grant
 - 60 -

Appendix 6: Transcript

I: First of all can you tell me about the time prior to the diagnosis, for example when
did you have your first concerns?

P: Yes, erm we had our first concerns at around the time of Martins second birthday,
erm, and he erm, he was 2 and a half, erm, at around the time of his second birthday,
erm, he became very quiet, he‟d had a gastro-intestinal infection and had been in
hospital a few nights on intravenous anti-biotic, erm, and sometime after that he
started to go very quiet, and then, his language never really picked up, so that
happened in about the September of that year, his birthday was in July, and erm, by
Christmas he was completely mute, I mean, he had got no language left at all, and
erm so we knew something was badly wrong, and you know we‟d both been doing a
lot of reading and really came to the conclusion that it really had to be Autism
although we didn‟t have a diagnosis,

I: so what did you know about Autism at the time?

P: very little, but we just read around, and we were trying to er, erm, to erm, see well
if its not that what else could it be, and it looked to us that it had to be that but we
hadn‟t known anything about it before

I: Ok and how did you feel at that point? What were your thoughts and feelings?

P: erm, very frightened I think, erm extremely worried, and erm, 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 it took that long, erm,

I: and tell me about, how did you first go about seeking the diagnosis?

P: well, at, at Christmas when he‟d lost his language which would have been
Christmas 2001, yep, Christmas 2001, I took him to the GP erm, and erm, I won‟t say
anything on the record about the GP *laughs* except that erm, his opinion at the time
was that he probably has an infection and would be absolutely fine, so he wasn‟t
 - 61 -

interested basically, so we took him to the child development team, erm, and erm got
a diagnosis in march, but that was the next thing we did, we got in touch with
Camden, had appointments with the child development team, and he was investigated
for ear infections and, deafness and varies things

I: yep, and how easy or difficult would you say to get that diagnosis?

P: erm it wasn‟t extremely difficult, but I think there was a reluctance to make the
diagnosis, and we were aware that we‟d need the diagnosis to get much in the way of
support or in the 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 that‟s a long winded way of calling it autism so please call it
autism, or I did,

I: So would you say you had to work on your part?

P: erm quite a lot yer, erm I think, with a different team possibly it would have been
harder to get the diagnosis, erm it was, it was fairly hard

I: and once you‟d got the diagnosis, once they had said it to you, how did you feel
then?

P: well I think we knew at that point so paradoxically there was a kind of relief that
we‟d got the diagnosis and we could get help

I: and erm, did you tell other members of the family?

P: we did,

I: and how did they feel about it?

P: oh I think they were very, very worried, I think they were upset, er I mean we‟d
kept them up to speed with our worries before the diagnosis, so it wasn‟t a complete
bolt out the blue for them erm, but yer they were very upset
 - 62 -

I: ok, and erm did you feel supported at the time?

P: by the family?

I: yep, and by the authorities

P: erm, by the authorities, somewhat, and family the family yes I think so, I think so

I: and would have liked more support from the authorities?

P: yep,

I: what would that have looked like?

P: Well, I mean I think I would have, we would have liked more frequent
appointments, much earlier funding, much earlier erm, er, you know, many more
appointments for Martin with speech and language therapists and occupational
therapists than we got, not that those would have really done the trick, but it would
have been nice to have them

I: and where did the diagnosis take place?

P: at the child development team in Camden, Camden and Islington

I: ok, yep, and tell me about the time immediately after the diagnosis was made? What
was especially difficult about that time?

P: erm, I think what was difficult about that time was erm, setting up a program for
him, but actually we did set up a bit of a program slightly before the diagnosis was
made, erm, but I think

I: an ABA program?
 - 63 -

P: an ABA program, erm, and I think what was difficult was gathering a huge amount
of information, not really having any support to do that and having an authority, a
local authority that didn‟t really seem to know what to do, that could make a diagnosis
but there seemed to be very little in the way of interventions being offered,

I: ok, and, just going back a few steps, how did you find out about the ABA?

P: erm we found out about the ABA, erm initially because a friend of my wife‟s knew
somebody who had just started a program and we found about verbal behaviour
actually and we went along to a presentation given by an ABA consultant from the
states called Pat Mcgreivy, erm, and that was our first official exposure to it, I then
went to the states to a conference to find out more, so we were very proactive

I: yep, yep, and you said you found out from someone else, was this another parent?

P: it was yer

I: did you tend to talk to other parents?

P: we started seeking out other parents, yep,

I: yes, and thinking about 6 to 12 months after, had your understanding of the
diagnosis changed at that point?

P: erm, of the diagnosis, probably not, but the possibilities for helping Martin, that
had changed,

I: in what way?

P: well, we‟d become convinced that ABA was the way, erm, to, erm help him, and
erm, you know, we‟d seen him go from a child who was not communicating at all, to
initially one who began to mand (request) again and you know some other skills,
 - 64 -

I: so from the initial prognosis, had your outlook changed? From Martin gaining new
skills?

P: erm, well, they didn‟t give us a prognosis, really, I mean, erm they, erm, I think
they were basically saying, he‟s got autism what we offer is speech and language
therapy and OT, and that‟s it, but they were really saying and the effect will be, you
know, they, they, basically they were saying I‟m sorry he‟s got this and we‟ll do what
we can which is not very much, which was the implication, although they never said
that in so many words,

I: right, and do you think there are any reasons for that?

P: yer erm, I think, because their, erm, under informed and under skilled, *laughs* I
think they don‟t know how to help, erm, so they do, put in place, what they know how
to put in place, which kind of has the er, erm, hidden advantage of being cheap,
which is to offer not much, so that‟s what ends up being offered,

I: uhuhm, and at this time six to twelve months after, had your feelings changed?

P: Yer, I think we were much more, well, you come to terms with it, we knew that it
was part of our lives, we‟d been running a program, erm, self-funded at that point,
erm, and erm, we erm, 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,

I: uhuh, ok

P: yep, by that stage

I: right, and erm, how did the diagnosis impact on your life at that time?

P: well, I think erm, on our lives, it sort of erm, it meant that home programming
really took over, I mean, the house became like a train station and we had loads and
loads of therapists and supervisors and consultants coming over, and my wife and I
 - 65 -

both thought about and then started training, you know getting the qualification, erm,
but it completely took things over, but I think, although their not here, it would be
interesting to know the views of Martin‟s older siblings because it had a big impact on
them

I: how many siblings does he have?

P: two, he‟s got sister that‟s two years older and a brother that‟s four years older, erm,
and erm, you know, I think attention diverted significantly from them to Martin
because he was the emergency

I: and would you say, you and your wife trained in the area, would you say it was a
way of dealing with it?

P: yes I would, definitely

I: right, and erm, how exactly do you think it impacted on your other children‟s lives
aside from a lack of attention?

P: yer, erm, I think it meant that, erm, I mean we got a lot more, help into the house in
other ways as well, because we were putting so much energy into Martin, a lot more
cleaning and that kind of help, so a lot more was done for them that would otherwise
have been done, because there was always someone around to tidy up, erm, you know
I think they had to kind of adapt themselves to the fact that their were all these people
around, erm, on the other hand, I think they then got exposed to a very interesting

*paused to get a drink*

I: where were we, erm, about impacting on your other children‟s lives?

P: yes, erm, so they 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, erm and er, and I could tell you some stories about that,
 - 66 -

which I won‟t now but its, I just know that they are much more relaxed about that
then they would otherwise be,

I: would you say they‟ve gained some kind of expertise?

P: some, yer, I would say some expertise, I mean, a kind of kindness and kind
firmness which is sort of in a way, I see it as one of the hallmarks of good ABA, erm,
so, they are kind of like that with Martin,

I: ok,

P: so there have been positives and negatives for them, I mean, how they would be
different had Martin not become autistic I don‟t know, but I would say positives and
negatives, but I don‟t think they are resentful in anyway or anything like that

I: no, no, and at this point, six to twelve months, what forms of support did you
receive?

P: erm, speech and language therapy and occupational therapy, from erm, Camden,
but very little, very, very little, and erm it was intermittent and often cancelled, and so
really the input Martin was getting was mostly the self-funded home programme

I: ok yep,

P: and what kind of interaction did you have with support services?

P: very little,

I: ok, well, was it positive or was it negative?

P: I‟d say it was mostly positive or neutral erm, you know the OT and SALT, as I
remember, were very friendly, its just that they didn‟t Havre that much to offer and
probably wouldn‟t have done even if they had had much more time, but half an hour
every couple of weeks was not going to be enough
 - 67 -

I: so what would you have liked exactly?

P: well, I would have liked ABA to be provided you know I would like a situation
where the local authorities knew what it was, had the people who were trained to
deliver it, and had got it, but given that that was an impossibility I think we would
have liked much more, especially, SLT, than we got

I: yep, and interaction-wise, what would you liked? More, less?

P: I think just more interest, more question, more erm, more, erm, intelligence I
suppose

I: and presently, how do you feel about the diagnosis?

P: I feel erm, how do I feel about it at the moment, well, I have felt pretty exhausted
about it, erm, certainly up until Martin getting into Treehouse, I mean, you know I
think, I sort of swing between being pleased that he‟s made as much progress as he
has and being disappointed that he hasn‟t made more, which is entirely down to me,
because I mean he‟s just, he does what he does, erm and sometimes I feel very up
about it and sometimes I feel very down about it, erm, so, erm, I also feel that he‟s, I
mean he‟s, given us a lot, in terms of experiences and erm, I mean again, having all
these people in our lives that wouldn‟t otherwise be in our lives, its been very positive
for me, and erm, and you know, its kind of, its very hard now, we‟ve lived with this
for quite a while, that, we can‟t really separate the diagnosis from Martin, I mean, he‟s
lovable and adorable and you know, so you know he‟s be someone else if he didn‟t
have the Autism, erm, so I mean mostly at the moment I feel positive about it, he is
who is he and we are going to continue to support him as best we can, erm, so, yer it
varies, I suppose, erm

I: through the years, you mentioned earlier about coping, what other strategies?

P: what I might have done, yer, I could of waited longer erm, before training, and erm,
got much more psychological support for myself I think, because, rather than really
 - 68 -

address, the shock to me, erm, I kind of went straight into training and practicing and
working with Martin and that sort of thing as a coping strategy, so erm I think I could
have got, some counselling for me, maybe specifically for this, I think it was a
characteristically me way of dealing with it, it wasn‟t so much me ignoring it as erm
making it manageable making it something where I could feel useful, rather than
admit that it had completely knocked me side-ways, which it had

I: yep, and for Martin, did you expectations change for him?

P: yep, I mean I think, right at the beginning, it was it‟s a complete disaster he‟s lost
all of his skills then that moved to my god maybe we‟ll 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, you know, but,
but, yer I think expectations change, but at the moment we‟ve kind of settled into a
place of where he‟s going to continue to make progress, it might be slower progress
then my other children will make, but he‟ll continue to make progress,

I: and, why do you think that your feelings have changed?

P: I just think we, we have more information, more experience, I‟ve seen loads of kids
with autism, and erm, and we know Martin, I‟ve known Martin for longer, I‟ve seen
him change, erm, and erm, I, you know, I‟ve had longer to come to know, to
understand what he really likes, what continues to be incredibly difficult for him, erm
and I suppose more, more experience on which to base a realistic assessment on, you
know, its been a while now, nine years ago, so, nearly ten years ago, so erm, we know
him quite well

I: and do you think there was a moment in that time of acceptance, did it take time?

P: erm, I don‟t think there was a moment of acceptance, erm, I think, yes, I mean, er
at some point, I think I realised that erm, I didn‟t need him to be different for me to be
happy, that I mean I don‟t know if this is addressed in any other question but I think
its significantly the case that he doesn‟t suffer, certainly more than any other child
would just from the ups and downs of everyday life, and maybe less then many
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children, erm, and I think that if he was suffering, if he had some sort of emotionally
or more likely some physical problem, I would find that a lot harder, to the extent that
he seems to be really quite happy with who he is, that makes it easier,

I: yep, yep, and have other family members thoughts and feeling changed?

P: well I think they have, well I think, I‟m not sure how my wife‟s have, I know that
she tends to be more, erm, more happy than I am with the progress he‟s made and
more surprised by the progress he made, erm, with the children I think there‟s been
phases of just finding him very irritating, which he can be, erm, and I, now that they
are a bit older, one is 15 and one is 13 their so wrapped up in their own lives, that
that‟s where their focus is, and they don‟t think about, they don‟t think all that much
in terms of expectations, I think they recognise that he‟s going to continue to have a
disability

I: right, and widening it out a bit, to outside the intermediate family?

P: erm, yer I mean, I think that erm, there‟s been a sort of distancing, I mean in the
early days of the home programme it was a bit like our extended family was watching
our consultation, and that‟s reduced over time, as you would expect, erm, and I think,
you know, that because they don‟t have frequent contact with him, they don‟t really
know how to be with him, so I mean even his grandmother, she‟ll come and she‟ll say
hello Martin and he‟ll say hello granny, and that‟s about it, whereas we know other
ways to interact with him, with the two of them, that‟s what it is, so I think so I think
her expectations is that she won‟t have much of a relationship with him, although I
may be wrong

I: and do you think her feelings have changed?

P: I don‟t know you know, I think they probably have, I mean she was extremely
worried, the whole family was extremely worried, I mean she‟s probably more
accepting now of that this is who he is,

I: yep, and how does it impact on your life now?

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P: erm, well, you know I changed my career because of Martin, I wouldn‟t be an ABA
consultant, I wouldn‟t know anything about ABA, obviously, erm I socialise with
different people, I work with different people, erm, I involved in child care in a
different way then I would be, so in a way its kind of much more deliberate with
Martin, I mean we have a morning routines at the moment where we are teaching him
top get himself up and get dressed and do his breakfast independently, but obviously
that wouldn‟t be happening, and it‟s the same with a night-time routine, so I mean its
just there much more deliberation in my relationship with him then there otherwise
would be, erm, I go on different kind of holidays then I would do, because sometimes
I go away with him, horse riding holidays, taking him abroad so he can go in the sea,
and you know, so erm, there‟s a kind of erm, meshing of both personal and
professional, because they are the same field really,

I: and obviously Martin is at Treehouse now, where was he before Treehouse?

P: he was, for two years he was at an autism unit attached to a Camden mainstream
primary school

I: yep, and now he‟s at Treehouse, has this affected the impact on your life?

P: yer, I mean I feel much more relaxed about what is happening during the day, I
mean partly because you get a lot more information but partly because the information
we get is encouraging, I mean, I am happy with the targets that are being set, erm he‟s
very happy to go there, erm, all the staff that have anything to do with him I really
like, I mean its really good so, erm, yes I mean I am significantly more relaxed
because I don‟t think he‟s wasting his days, which was at least in part true where he
was, it wouldn‟t be fair to say it was entirely true, erm, but the benefit was very much,
when it was there, was in terms of play and some independent skills but in terms of
anything approaching discrete trial training, then obviously forget it,

I: yep, and was it hard to get him into Treehouse?

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P: surprisingly not, I mean we had tried to get him in there for primary and we had
lost at tribunal, so that had been very expensive and the unit that he did go to had just
opened so it was unfortunate timing because the local authority could claim that they
had an autism specific provision, which officially it was, but they don‟t have anything
equivalent to that at secondary, and I think, I mean our view was that he should have
gone to Treehouse at primary, I know there are people at Camden who agreed with us,
because they told me, and erm, I done quite a lot of work with Camden, being on
varies committees etc in the mean time, so erm varies factors but is suspect that they
knew that they didn‟t have a viable alternative and possibly they had got it wrong the
first time meant they we didn‟t have to go to tribunal, so it wasn‟t hard

I: and just out of interest, what did you do before you retrained?

P: well, for a long time, I had been a psychotherapist, so I was a different kind of
psychologist, I mean, I didn‟t know anything about behaviour and I had heard of
Skinner but probably thought he was the anti-christ, *laughs* erm, and erm, I had
begun, I had stopped being a psychotherapist and then had begun to retrain in
computing and I had only been at that for, a couple of years, when Martin lost his
skills so that was interrupted,

I: and your wife?

P: well, she had been a teacher of the Alexander technique; don‟t know whether
you‟ve heard of it

I: it rings a bell

P: well it was a kind of postural thing and before that she was an academic but erm,
she had been mostly looking after the other kids so had been working part-time

I: yep, ok, so was it a fairly, well, straightforward transition into retraining?

P: it helped, because, with some aspects of it, but you know, as you know from your
experience, ABA is a very particular way of thinking about human psychology and
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erm, erm, behaviour, so um, so I think it was straightforward mostly because er we

had this huge drive for understanding, I mean fortunately for both of us, you know,
when we began to learn about ABA it just clicked and I thought yep this makes
perfect sense, you know, so from, intellectually it was relatively easy because I wasn‟t
having to struggle with stuff I didn‟t really believe it, it was sort of oh yer, yer, that
sounds right,

I: yep, erm how is your relationship with support services now?

P: erm, minimal. Because he‟s at Treehouse, erm, so, we have occasional visits from
social services and that‟s about it, we had, the other support that we had, was er my
wife and I had some counselling sessions with somebody from Camden, erm, they
were infrequent, and were specifically around this sort of issue, and the way it was
impacting on the two of us, yer, and quite I quite liked the person we worked with,
and that went on for a few months, and on one occasion at her suggestion we brought
our other kids along to a session, erm, oh and Martin, yer Martin was there too, and
that was all quite amusing really, not that useful it was, at one point the psychologist
asked my other son so who in your family has most been affected by Martin‟s Autism
and he said well Martin obviously *laughs* which is not what she was expecting, but
I think was the right answer

I: yer, yer *laughs* that‟s interesting, and you said your relationship with them is
minimal is that how you would prefer it?

P: erm, unless I found that they found that they had something to offer then it might as
well be minimal, because otherwise its just wasting everybody‟s time,

I: yep, and er, thinking about the future, what anxieties have you got about the future?

P: erm, one anxiety is that the local authority will find a way to stop Martin‟s
provision at Treehouse before he‟s nineteen, I don‟t think that will happen but I do
sometimes worry about it, erm I worry that he will become unhappier if he becomes
more aware of his differences, although I‟m not sure that will happen, but I worry
about that, I worry that puberty and teenage years will be difficult, erm, and erm, I
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worry about post nineteen provision, although hopefully that will develop at
Treehouse and we can make use of it, erm, but yer I worry about his adult life and
what we will do and what we will be able to do, and obviously ultimately worry about
what will happen after we‟re no longer here

I: yes, and what would you like to happen in the future?

P: I, well at the moment what I would like to happen is that he continues to get as
much support as he needs and wants, erm, that he has somewhere independent to live,
I mean possible, communal living, I don‟t know, I mean, it depends on whether that
suits him, possibly that, possibly a flat, um, where he can have a carer who lives in, I
would I would like that, and I‟m in a position, I think, to be able to buy somewhere
for him in the future but you know could be used for that purpose, erm, you know and
I would like him to be able to do the things that he enjoys doing, erm, and in a way
that‟s appropriate to his age, to continue learning, erm, I don‟t want to treat him as a
school child forever, but, erm, if he continues to learn and we can teach him in ways
that he finds enjoyable then I would be happy,

I: and can you sum up the diagnosis process?

P: the diagnosis, the whole thing?

I: yes, yes,

P: erm, life changing, erm, trauma er well traumatic, and at times exciting and
interesting, yer,

I: well that‟s it, thank you very much.