Article

Clinical Child Psychology

and Psychiatry
Communicating a diagnosis of Autism 18(3) 370­–382
© The Author(s) 2012
Spectrum Disorder - a qualitative Reprints and permissions:
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study of parents’ experiences DOI: 10.1177/1359104512455813
ccp.sagepub.com

Mandy Abbott1, Paul Bernard2 and Jenny Forge3

1Northumberland Tyne
and Wear NHS Trust, UK
2Darlington
CAMHS, Tees Esk and Wear Valleys NHS Foundation Trust, UK
3Durham Dales CAMHS, Tees Esk and Wear Valleys NHS Foundation Trust, UK

Abstract
Not enough is known about parents’ experiences of receiving the news that their child warrants
a diagnosis of Autism Spectrum Disorder (ASD). Sharing this information with parents is an
important and difficult part of Child and Adolescent Mental Health (CAMH) practice. Qualitative
methodology was used to explore the experiences of the ‘feedback session’ with nine sets of
parents in a community Child and Adolescent Mental Health Service (CAMHS) in North East
England. Parents gave vivid accounts of their experiences and described issues relating to the
structure, style and content of the session. The experiences of CAMHS users should inform the
development of good practice in this important area.

Keywords
Autism Spectrum Disorder, diagnosis, communication, parents, experiences

Introduction
Being told that one’s child warrants a diagnosis of Autism Spectrum Disorder (ASD) is likely to be
a momentous event in the lives of parents. In the UK, senior clinicians working in a community
Child and Adolescent Mental Health Service (CAMHS) are regularly involved in breaking this
news to parents. It is an important and challenging part of Child and Adolescent Mental Health
(CAMH) practice. We were keen to improve our own practice in this important area and in line
with the National Service Framework (Department of Health, 2004) we wanted to learn from ser-
vice users’ experiences.
A diagnosis of ASD necessarily implies a pattern of development that will have a lifelong
impact on the child and his/her family members. The diagnosis may bring benefits such as a frame-
work for understanding and access to support and services, but receiving the news of a diagnosis
of ASD can be a very difficult experience for the young person and for the family. Parents make

Corresponding author:
Mandy Abbott, Northumberland, Tyne and Wear NHS Foundation Trust, Newcastle Community CAMHS, 1st Floor,
Benton House, 136 Sandyford Road, Sandyford, Newcastle upon Tyne, NE2 1QE, UK.
Email: mandy.abbott@ntw.nhs.uk
Abbott et al. 371

Box 1.
I think that conveying difficult news to parents is just as much of an art form as doing an operation and
it’s just as important to be self-critical.
Professor David Hall in Right from the start template – good practice in sharing the news (SCOPE,
2006).

sense of the diagnosis in a variety of ways (Dale, Jahoda & Knott, 2006), and there is a range of
potential impacts on the family system (Bloch & Weinstein, 2009). Research into the impact of the
diagnosis on parenting stress is at an early stage (Davis & Carter, 2008, Osborne, McHugh,
Saunders & Reed, 2008;). Some parents express dissatisfaction with the diagnostic process and the
way that the diagnosis is communicated to them (Brogan & Knussen, 2003; Hackett, Shaikh &
Theodosiou, 2009; Mansell and Morris, 2004; Osborne & Reed, 2008). Parents’ feelings about the
involved professionals may be complex and ambivalent (Avdi, Griffin & Brough, 2000).
There is a substantial literature on breaking bad news to parents about a disability in their child.
Right from the start template – good practice in sharing the news (SCOPE, 2006) is published with
the support of the Department of Health and regularly updated, and is widely respected. It outlines
key principles and a practice framework for professionals involved in the disclosure of a diagnosis
of disability to families. The literature in the field of disability also includes research into and guid-
ance about more specific conditions and circumstances such as: Cunningham, Morgan and
McGucken (1984) regarding Down’s syndrome, Baird, McConachie and Scrutton (2007) about
cerebral palsy, Jupp (1992) in relation to newborns and Cottrell and Summers (1990) in situations
where the diagnosis is unclear.

Box 2.
The importance of conveying diagnosis sensitively to families cannot be overstated.
(National Institute for Health and Clinical Excellence, 2011: p. 35).

In the UK, authoritative guidance for professionals about how best to communicate a diagnosis
of ASD has developed over recent years. The question was briefly considered in the National
autism plan for children (National Autistic Society, 2003) and in the autism exemplar of the
National service framework for children, young people and maternity services (Department of
Health, 2007). Autism in children and young people (National Institute for Health and Clinical
Excellence [NICE], 2011) deals with this area of practice in greater detail. The guidelines suggest
that: the process should be given ample time; professionals should follow the lead of the parents
and carers; there should be an opportunity for families to respond. The guidelines go on to recom-
mend that professionals should: share the conclusions sensitively, in person and without delay;
explain what ASD means and how it can affect development and function; consider the risk of ASD
occurring in future siblings; provide a detailed written report of the assessment; arrange a follow
up appointment to take place within 6 weeks.
We set out to find literature about parental perceptions of the experience of receiving a diagnosis
of ASD for their child that was relevant to our setting: a community CAMHS team in the UK. A
372 Clinical Child Psychology and Psychiatry 18(3)

good number of studies (including several from the UK) have looked at parents’ perceptions of the
ASD assessment and diagnostic process as a whole. These include questionnaire-based surveys
(Goin-Kochel, Mackintosh & Myers, 2006; Howlin & Moore, 1997; Howlin & Asgharian, 1999;
Mansell & Morris, 2004) as well as studies incorporating interviews or focus groups (Hackett
et al., 2009; Midence & O’Neill, 1999; Moore, 1999; O’Brien & Daggett, 2006; Osborne & Reed,
2008). Some of these broad studies of the process of diagnostic assessment provide helpful infor-
mation about parents’ perceptions of the diagnostic disclosure but this area plays a small part in the
overall study so their relevance to our enquiry was necessarily limited.
Only three published studies that we could find set out to focus primarily on parental experi-
ences of disclosure of an ASD diagnosis. Nissenbaum, Tollefson and Reese (2002) conducted an
interview-based study in the USA of parents’ and professionals’ perceptions of the ‘interpretative
conference’. Brogan and Knussen (2003) carried out a questionnaire study in Scotland to investi-
gate the determinants of parental satisfaction with the disclosure interview of a diagnosis of ASD
for their child. Futagi and Yamamoto (2002; published in Japanese) undertook a questionnaire
study of a small sample of mothers about their experiences of receiving a diagnosis of autism in
their child several years previously.
Another factor that limits the relevance of the existing literature is in relation to setting. In the
UK, younger children would typically be diagnosed in a Child Development Clinic or in a multi-
agency ASD assessment service that includes a Paediatrician. Community CAMHS professionals
would usually be involved with ASD assessments in school-aged children and adolescents; in this
group the ASD features are often less obvious and less severe. Of the studies cited so far, only one
(Hackett et al., 2009) took place in a community CAMHS setting in the UK. Many or most of the
children in the other studies were of pre-school age at the time of diagnosis.
Our investigation of the literature revealed the lack of a published, qualitative, interview-based
study investigating the experiences of parents receiving a diagnosis of ASD about their child in a
community CAMHS service in the UK. We therefore undertook such a study.

Method
The study was based in the community CAMHS service of a Mental Health and Learning Disability
Trust in North East England. The two Local Authority districts covered by the service rank 70th and
104th (out of a total of 326 districts in England) in an index of deprivation (Office of National
Statistics, 2010). CAMHS clinical staff in the service play an important role in the multi-agency
assessment of children and young people who may have an ASD. Four consultant child and ado-
lescent psychiatrists took part in recruiting to the study. Each psychiatrist was invited to ask con-
secutive sets of parents / carers to participate in the study shortly after having been involved in
making a diagnosis of ASD and sharing this with the parents. The inclusion criteria were that the
parents / carers were English-speaking and did not have a learning disability and that the child had
received a diagnosis of ASD in the previous 6 months. Approval for the study was obtained from
the local Research Ethics Committee.
The research interviews took place between June 2008 and February 2009 and were carried out
with parents by MA (the first author) who had not been involved clinically with any of the families.
The research interviews took place in the family home or in a CAMHS unit according to parental
preference. The interview schedule was piloted with one family before use. It followed a semi-
structured format and used open questions to encourage a rich or ‘thick’ (Geertz, 1973) narrative
account. It included questions about the structure of the meeting, the manner in which it was con-
Abbott et al. 373

ducted and parents’ experiences of it. The research interviews were audio-taped and later tran-
scribed verbatim and anonymised.
A general inductive approach (Thomas, 2006) was used to analyse the data. Inductive approaches
are intended to aid an understanding of meaning in complex data through the development of
themes from the raw data. The themes are developed into a model that summarises the raw data and
conveys key concepts and processes. The aim of our analysis was to produce a detailed and sys-
tematic recording of the themes generated in the interviews and to link them together within an
exhaustive system of themes and sub-themes which are internally homogeneous, externally hetero-
geneous and grounded in the transcripts.
Each of the three authors independently read and re-read the transcripts, immersing themselves
in the data and making notes. Each then independently identified Initial Themes on the basis of
their ability to ‘capture something important in relation to the overall research question’ (Braun &
Clarke, 2006). This was followed by discussion - which revealed good inter-rater reliability. Further
discussion and debate led to agreement about how the initial themes should best be clustered
together under higher-order headings and subsequently to agreement about Key Themes.
Triangulation of the data was carried out by checking elements of the interview transcripts
against entries in the clinical notes. No inconsistencies were identified and no amendments were
made.

Results
Nine families were recruited to the study. Data from the participating clinical staff suggests that
10 families were asked to participate – thus giving a 90% response rate. The adults involved in the
study were all parents rather than carers. Table 1 describes the age and gender of the children and
the diagnoses given. It also gives details about which family members and which professionals
were present at the feedback session and which family members were present at the research
interview – as well as the length of time between those two interviews. The mean age of the chil-
dren was 11.2 years; all were of White British ethnic status; eight children lived in two-parent
families. The families came from a range of socio-economic backgrounds.
The interviewed parents were pleased to take part in the study, spoke freely and welcomed the
opportunity to recount their experiences. The feedback session had been of enormous significance
to them. Many had vivid memories of the moment when the news about the diagnosis was given to
them; recalling these memories was often associated with distress. Nevertheless, parents were
generally very positive about the feedback session and the professionals involved. Each of the
involved parents described their own particular experiences and impressions but there was substan-
tial consensus on many issues.
In addition to their accounts of the feedback interview itself, many parents talked about the
frustration that they had experienced leading up to the diagnosis. Two families expressed anger that
the diagnosis had taken so long to achieve and that, in the past, professionals had given alternative
explanations of their children’s problems. Many recounted the difficulty of knowing that their child
might warrant a diagnosis of ASD but needing to wait to have the diagnosis confirmed. Factors that
seemed to ameliorate this were being kept informed about the various stages of the diagnostic
process, and accepting that its length was due to thoroughness and the need for several different
professionals to make assessments. One clinician had pre-warned parents about how long the
assessment would take and had given them a timetable for the assessment process. This was com-
mented on as being particularly helpful.
374 Clinical Child Psychology and Psychiatry 18(3)

Table 1.  Details of involved children and families.

Age Gender Diagnosis Family members Family members Clinicians Interval between
(years) present at present at present feedback session
feedback session research and research
interview interview (weeks)
1 11 Boy ASD Mother and Mother and Psychiatrist  3
father father and clinical
psychologist
2 15 Boy ASD Mother and Mother and Two 14
father father psychiatrists
and clinical
psychologist
3 14 Boy ASD and Mother and Mother Psychiatrist 13
Fragile X support worker and clinical
Syndrome psychologist
4 8 Boy ASD Mother and Mother and Psychiatrist  5
father father and clinical
psychologist
5 14 Boy ASD Mother and Mother Psychiatrist 13
father and psychiatric
nurse
6 12 Boy ASD Mother and Mother Psychiatrist,  3
father and aunt clinical
psychologist
and psychiatric
nurse
7  8 Boy ASD Mother and Mother and Psychiatrist  8
father father and clinical
psychologist
8  9 Boy ASD Mother and Mother Psychiatrist and  6
child trainee
9 10 Girl Asperger’s Mother and Mother Two  4
Syndrome father psychiatrists
ASD: Autism Spectrum Disorder.

Approximately 50 Initial Themes were identified from the data. Twenty-one clusters of themes
were then identified and from these four Key Themes emerged:

1. Parents’ emotional state and reactions to the diagnosis

2. Amount and clarity of information
3. Structure of session
4. Consultation style and relationships with clinician(s).

Quotations are given within each Key Theme. In reporting the themes below, we give indica-
tions of the frequency with which the concerns, issues and processes were commented upon by the
different families involved in the study. Numbers in brackets after quotes indicate which family
provided them.
Abbott et al. 375

Key Theme 1: Parents’ emotional state and reactions to the diagnosis

All but one of the parents described some anxiety in anticipation of the feedback session and in its
early stages. For several families this was added to by the fact that they had waited a long time for
a diagnosis. One set of parents was concerned that an incorrect diagnosis might be given.

Oh, a bit apprehensive … apprehensive to start with … [addressing husband] weren’t we? As we had just
been passed from one doctor to another … no doctor would stipulate what it was or have the stigma of
saying what it was. (1)

It was a bit nerve racking at first … (3)

It was me that got upset really [mother] … the shock of it more than anything. (4)

I was very nervous before it…shaking when we first went in…although I’d wanted to know for a long time. (6)

One parent reported ‘hoping against hope’ that her concerns were misplaced.

Somewhere at the bottom of it you just hope that they’ll say ‘You know what? She’s fine, we don’t need
to see her anymore, just take her and have a happy life’ even though it’s never going to happen really
[became tearful]. (9)

The impact of the diagnosis was profound to almost all parents, even if they were expecting it.

I was shocked. I felt like I’d been punched in the stomach. (4)

We were prepared for them to come up with the diagnosis … I was still upset. (1)

The emotional impact of being told the diagnosis had an effect on some parents’ ability to
absorb further information.

You’re saying things and you’re nodding and all that’s going through your mind is ‘where do we go from
here?’(6)

Once you hear the words, the diagnosis, that’s all you think about. It takes time to sink in - so you’re not
really conscious of what’s said after that. (4)

For the majority of parents, the emotional impact of receiving the diagnosis lasted beyond the
session itself: sometimes for a considerable period of time.

I just cried all the way home. (1)

After the session I was mentally exhausted … and sad. You just wish that you could make it all better. (3)

It was funny really because I expected not to feel much of anything. I thought ‘well we know what’s going
to happen’ but really for a week I just felt lost. (9)

On hearing the diagnosis, some parents felt ‘vindicated’. Two sets of parents described a pragmatic
response. Many felt a sense of relief that at last they had an explanation of their child’s problems. One
parent expressed a sense of guilt as she felt responsible for handing on the disorder to her child.
376 Clinical Child Psychology and Psychiatry 18(3)

It just proved that we were right from the beginning. (1)

[It is a] case of moving on now and dealing with the problems that he’s got. (3)

When he actually relayed the diagnosis to us it was quite a relief and he did give us a good understanding
of how they see P which matched what we saw, so it was good in that sense. (7)

Key Theme 2: Amount and clarity of information

All the parents were satisfied with the duration of the sessions (most of which lasted about an
hour). Some cited the danger of ‘information overload’ during the feedback interview and the
majority had some difficulty absorbing and collating all the information given to them. When par-
ents were offered a further appointment for more discussion they clearly welcomed it.

It was long enough to take things in at that stage. You felt that if they’d been any longer, you wouldn’t have
been able to take too much in. (6)

There was a lot to take in … system overload! (3)

About half of the parents struggled with understanding aspects of the assessment, such as psy-
chometric testing.

How they had worked out his low IQ and his centile … that was hard to get your head round. (3)

Several parents felt confused and overwhelmed by the way in which information was
conveyed.

It’s not exactly layman’s terms he comes out with … he doesn’t always make it, what I call, plain English. (1)

But then he’ll start like going to graphs and saying if he had a bit of this he would have it and I’m thinking
… ooh … it was just too much to take in.(1)

There’s no Ph D on my forms. (1)

Need to go on a course to take it all in! (8)

Many parents were given written information (including reports) and the details of websites
(such as that of The National Autistic Society) to take away with them. Several commented on their
usefulness particularly for explaining ASD to other family members and friends.

She also presented it on a piece of paper so that we could read it as well so that was useful. (2)

The information’s been helpful, if in no other way, to explain to the rest of the family, because trying to get
it into words yourself and getting them to understand … that’s the hardest part.(3)

Key Theme 3: Structure of the session

All parents valued reviewing the assessment process which had led to the diagnostic conclusions.
Abbott et al. 377

[Clinician] went back over the interviews and the responses that he had from [child] … he led us through
everything that we had done since day one - to refresh our memories. (5)

One set of parents had hoped that they would have been able to see the recording of the ASD
Schedule.

We would have liked to have seen [child’s] interaction with somebody else. There’s always this thought in
the back of our minds that we’re being oversensitive. We’ve had no involvement with ASD until it
happened so it would have been nice to have watched his interaction with [clinician] - to see what
[clinician] did with him and what that illustrated.(1)

A number of parents commented on the amount of information that was covered during the ses-
sion and appreciated a degree of ‘focus’.

[Clinician] did keep us focused ‘cos, as I say, I was of the idea ‘what’s going to happen when he goes to
secondary school?’ But that’s way ahead - we are talking here and now. (7)

All parents were given the opportunity to ask questions about the assessment process and the
diagnosis. This was appreciated by the majority although some felt uncertain, de-skilled and unsure
which questions to ask.

Yes there was definitely a chance to ask questions. (1)

I felt a bit thick … I didn’t know what questions you’ve got to ask them - with us not being from that field.(1)

I had the feeling of wanting to ask more questions, but not knowing what questions there were to ask.(1)

Key Theme 4: Consultation style and parent-clinician relationship

As described, most parents reported being anxious before receiving the feedback. A number men-
tioned that they felt the clinicians were aware of this and helped them to feel more at ease. All but
one set of parents felt that the clinicians involved had been supportive of them before and after
communicating the diagnosis. It seemed that a supportive relationship with the clinicians was dis-
proportionately important in helping parents come to terms with their child’s diagnosis.

He actually made you feel very relaxed and he was very approachable. (1)

It was a bit nerve racking at first … she was very nice and put us at ease and everything. (3)

All the families valued being listened to and being given time to absorb the diagnosis.

Very patient … very … umm … understanding … because there were tears. (3)

And once they had told us, they gave us time to sort of digest the information … to hear what they had said
really. (4)

Two sets of parents valued the clinicians being clear and definite about the diagnosis.

She didn’t beat around the bush. (2)

378 Clinical Child Psychology and Psychiatry 18(3)

It was very matter of fact … right OK … that’s it … let’s move forward. (7)
Roughly half of parents mentioned that the clinicians were positive about their child and their
parenting. This was clearly appreciated and seemed a very important factor in overall parental
satisfaction.

They said he’s a happy and pleasant little boy. (5)

They’ve always made positive comments about him. (1)

They tried to tell us how good he was in different things that he’s been doing. (2)

It’s nice that somebody says you’re doing a good job - it makes you feel a little bit happier. (9)

When the clinician communicated optimism about the child’s future, parents invariably found
this supportive.

They are optimistic and positive - I always find that they are actually. (9)

Parents valued clinicians getting to know their child as an individual and being interested in the
family as a whole.

They asked how things were with [child] and if she was still obsessed with those little dogs … so they
obviously knew [child] quite well. (9)

[Clinician] always asks about me, it’s not just about me; it’s about all the members of the family, if
everybody’s alright. (8)

Most parents described having established a positive and open relationship with clinicians dur-
ing the assessment process and greatly appreciated this.

It was quite informal actually ‘cos we knew them [the clinicians] fairly well … we had a chat and a bit of
a laugh. (9)

We’ve got [clinician’s] phone number and he’s always said if there’s anything that strikes us we can
contact him. (5)

Discussion
This was an investigation of parents’ experiences of a feedback session at which they received a
diagnosis of ASD for their child. Literature to guide clinical practice in this important area has
increased in recent years but is still limited. We carried out a qualitative study employing conve-
nience sampling and a general inductive approach in a community CAMHS setting in North East
England.
Parents reported that the feedback session was a significant and anxiety-provoking event in
their lives. It often followed a wait and quite a prolonged period of assessment. Most described that
being given the diagnosis had a significant emotional impact at the time and afterwards. There was
a range of reactions to the disclosure of the diagnosis. Parents were sometimes distracted from the
content of the session as a result. Some parents felt confused by the information and explanations
given to them. ‘Information overload’ was a risk for some. Written information was appreciated
Abbott et al. 379

although not given a high priority. Parents welcomed a structured and focussed approach to the
session and the opportunity to ask questions – though some parents were uncertain what to ask.
Parents valued being put at their ease, listened to and given time to absorb information. They
appreciated clinicians who recognised strengths as well as difficulties and were holistic and hope-
ful in their approach. The parent-clinician relationship, established during the assessment process,
was recognised as very important. Satisfaction levels among the group of parents we interviewed
appeared to be high. Many positives were commented upon. Critical comments related mainly to
the frustrations of waiting for the assessment and the difficulties of understanding some of the
information and explanations given.
The existing literature makes clear that parents are sometimes dissatisfied with how feedback is
given to them. The study by Brogan and Knussen (2003) focussed specifically on the issue of
parental satisfaction with the disclosure interview. In this study 126 parents (representing a 38%
response rate) completed questionnaires and of these 55% were satisfied, 13% dissatisfied and
33% neither satisfied nor dissatisfied. Two other broader studies from the UK included question-
naire items about communication of the diagnosis. Mansell and Morris (2004) report that 80% of
parents rated the team as moderately or very ‘sensitive’ in communicating the diagnosis; respon-
dents were least satisfied with information and explanations about ‘future consequences’ of the
diagnosis and ‘sources of treatment’. Hackett et al. (2009) reveal that a significant minority of
parents in their sample had some concerns about how the outcome of the assessment was commu-
nicated to them.
When comparing our study with those in the literature it is important to remember the differ-
ences in the settings and therefore the ages of the children involved. The community CAMHS
setting of our study explains why the mean age of the children (11.2 years) is higher than in most
studies in the literature. Differences in design and methodology are also crucial: questionnaire-
based studies have the benefit of larger sample sizes but the qualitative interview-based approach
we used gives insight into the fine grain of parental experiences.
The emotional impact of receiving the news of a diagnosis of ASD is well recognised. Parents
experience a range of reactions to the diagnosis, as is described in the qualitative study by
Nissenbaum et al. (2002). In our study, parents’ distress at hearing the diagnosis was often more
intense than they had anticipated, even if they were expecting the diagnosis. In some cases this
clearly affected their ability to absorb information during the feedback session. They appreciated
professionals being sensitive to this and being given time to absorb what was being communicated
to them.
The National autism plan for children (NAPC) (National Autistic Society, 2003) and Autism in
children and young people (NICE, 2011) both emphasise the importance of giving accurate and
high quality information to parents. In the study by Brogan and Knussen (2003), the quality of
information provided correlated with parental satisfaction. In our study a number of parents made
it clear that they struggled with the amount and complexity of the information being conveyed.
It is clearly essential to provide parents with sufficient opportunities to ask questions during the
feedback session. This correlated with parental satisfaction in the study by Brogan and Knussen
(2003). Our study highlighted the fact that some parents felt uncertain and de-skilled – wanting to
ask questions but not knowing what to ask. It is important for clinicians to be aware of this and
perhaps facilitate questioning by asking which areas parents felt they were least clear about or most
confused by.
The consultation style and communication skills of clinicians are well recognised as being of
key importance in the feedback session and are duly emphasised in the literature, especially in
qualitative studies (Nissenbaum et al., 2002; O’Brien & Daggett, 2006). Our findings help us to
380 Clinical Child Psychology and Psychiatry 18(3)

understand more fully why and how these aspects of clinical practice can make such a difference
to parents. Parents were often anxious before and at the beginning of the session; clinicians helped
to put parents at their ease and this was highly valued. The emotional impact of receiving the diag-
nosis led some parents to be distracted from the content of the session. Clinicians being sensitive
to this and responding appropriately was crucial for these parents. Parents often experienced sig-
nificant distress and sadness during the session. Clinicians mentioning strengths and conveying
hope seemed to make these feelings a little easier to bear.
Recommendations for practice in this area provide helpful guidance to professionals as a
template and a set of principles. However to optimise parents’ experiences of the feedback ses-
sion, clinicians must carefully tailor their communication to the individuals involved. Our
study showed that parents recognised and appreciated clinicians’ efforts to do this. Effective
two-way communication between clinicians and parents during the feedback session was facili-
tated by an open and trusting relationship between them. The importance of building up a posi-
tive parent-clinician relationship during the assessment process is emphasised by best practice
guidance (National Autistic Society, 2003; NICE, 2011). Our findings are very much in keeping
with this and appear to show that a good relationship with the clinician can significantly help
to ameliorate some of the distress experienced by parents on being given the diagnosis of ASD
for their child.
Our study has a number of limitations. Although the study focused on one session only, we are
mindful that feedback is a process that takes place over a period of time. The sample size was small
and the research only involved clinicians and parents who agreed to participate in it. The second
and third authors were involved in three of the nine clinical feedback sessions being studied and
therefore may have introduced a degree of bias. The parents involved may have given a different
account to a researcher who was not a psychiatrist.
The focus of this study concerned feedback to parents. Related areas of practice include feed-
back to the young person and the sharing of information with siblings, school and other profession-
als. If these processes are conducted well, the ground is prepared for effective post-diagnostic
support and interventions.
As clinicians wanting to develop our skills in communicating a diagnosis of ASD to parents, we
found it helpful to consult best practice guidance and to learn from the existing literature. However,
learning directly from the fine grain of parents’ accounts, as we did in this study, has led us to think
about and approach the task of giving feedback with greater insight into the experiences of the
recipients. We believe that we are now better in a better position to leave parents feeling informed,
respected and supported. We hope that other clinicians may also learn from the findings of this
research.

Box 3.
Parents valued:
• a structured and focused approach to the session and the opportunity to ask questions
• being put at their ease, listened to and given time to absorb information
• clinicians who recognised strengths as well as difficulties and were holistic and hopeful in their
approach
• a positive and open parent-clinician relationship, established during the assessment process.

Acknowledgements
We are very grateful to the families who took part in this study and to colleagues who provided comments on
drafts of the manuscript.
Abbott et al. 381

Declaration of conflicting interests

None declared.

Funding
This research received no specific grant from any funding agency in the public, commercial, or not-for-profit
sectors.

References
Avdi, E., Griffin, C., & Brough, S. (2000). Parents’ constructions of professional knowledge, expertise and
authority during assessment and diagnosis of their child for an autistic spectrum disorder. British Journal
of Medical Psychology, 73, 327–338.
Baird, G., McConachie, H., & Scrutton, D. (2000). Parents perceptions of disclosure of the diagnosis of cere-
bral palsy. Archives of Diseases in Childhood, 83, 475–480.
Bloch, J., & Weinstein, J. (2009). Families of young children with autism. Social Work in Mental Health, 8,
23–40.
Bowling, A. (2006). Research methods in health: investigating health and health services. Buckingham, UK:
Open University Press.
Braun, V., & Clarke, V. (2006). Using thematic analysis in psychology. Qualitative Research in Psychology,
3, 77–101.
Brogan, C., & Knussen, C. (2003). The disclosure of a diagnosis of an autistic spectrum disorder. Autism, 7,
31–46.
Cottrell, D., & Summers, K., (1990). Communicating an evolutionary diagnosis of disability to parents.
Child: Care, Health and Development, 16, 211–218.
Cunningham, C., Morgan, P., & McGucken, R. (1984). Down’s syndrome: is dissatisfaction with disclosure
of diagnosis inevitable. Developmental Medicine and Child Neurology, 26, 33–39.
Dale, E., Jahoda, A., & Knott, F. (2006). Mothers’ attributions following their child’s diagnosis of autistic
spectrum disorder: exploring links with maternal levels of stress, depression and expectations about their
child’s future. Autism, 10, 463–479.
Davis, N., & Carter, A. (2008). Parenting stress in mothers and fathers of toddlers with autism spectrum
disorders: associations with child characteristics. Journal of Autism and Developmental Disorders, 38,
1278–1291.
Department of Health. (2004). National service framework for children, young people and maternity services.
London, UK: Department of Health.
Department of Health. (2007). National service framework for children, young people and maternity services:
Autistic spectrum disorders. London: Department of Health.
Futagi, Y., & Yamamoto, Y. (2002). Disclosure of a diagnosis of childhood autism and parents’ acceptance
of the disability. No To Hattatsu, 34, 336–342.
Geertz, C. (1973). The interpretation of cultures: Selected essays. New York, USA: Basic Books.
Goin-Kochel, R., Mackintosh, V., & Myers, B. (2006). How many doctors does it take to make an autism
spectrum diagnosis? Autism, 10, 439–451.
Hackett, L., Shaikh, S., & Theodosiou, L. (2009). Parental perceptions of the assessment of autistic spectrum
disorders in a tier three service. Child and Adolescent Mental Health, 14, 127–132.
Howlin, P., & Asgharian, A. (1999). The diagnosis of autism and Asperger syndrome: findings from a survey
of 770 families. Developmental Medicine and Child Neurology, 41, 834–839.
Howlin, P., & Moore, A. (1997). Diagnosis in autism: a survey of over 1200 patients in the UK. Autism, 1,
135–162.
Jupp, S. (1992). A practical manual to help break the news to families when their baby has been born with a
disability. Cheshire, UK: Opened Eye Publications.
Mansell, W., & Morris, K. (2004). A survey of parents’ reactions to the diagnosis of an autistic spectrum
disorder by a local service. Autism, 8, 387–407.
382 Clinical Child Psychology and Psychiatry 18(3)

Midence., K, & O’Neill, M. (1999). The experience of parents in the diagnosis of autism: a pilot study.
Autism, 3, 273-285.
Moore, K., McConkey, R., Sines, D., & Cassidy, A. (1999). Improving diagnostic and assessment services for
children with autistic spectrum disorders. Early Child Development and Care, 154, 1–11.
National Autistic Society. (2003). National autism plan for children. London, UK: National Autistic Society.
National Institute for Health and Clinical Excellence. (2011). Autism in children and young people CG128.
London, UK: National Institute for Health and Clinical Excellence.
Nissenbaum, M., Tollefson, N., & Reese, R. (2002). The interpretative conference: sharing a diagnosis of
autism with families. Focus on Autism and Other Developmental Disabilities, 17, 3–43.
O’Brien, M., & Daggett, J. (2006). Beyond the autism diagnosis – a professionals’ guide for helping families.
Baltimore, USA: Paul H. Brookes Publishing Co.
Office for National Statistics. (2010). The English Indices of Deprivation 2010: Local authority district sum-
maries. Retrieved from http://www.ons.gov.uk
Osborne, L., McHugh, L., Saunders, J., & Reed, P. (2008). A possible contra-indication for early diagnosis
of autistic spectrum conditions: impact on parenting stress. Research in Autism Spectrum Disorders, 2,
707–715.
Osborne, L. A., & Reed, P. (2008). Parents’ perceptions of communication with professionals during the
diagnosis of autism. Autism, 12, 309–324.
SCOPE. (1994). Right from the start report. London, UK: SCOPE.
SCOPE. (2006). Right from the start template – good practice in sharing the news. London, UK: SCOPE.
Smith, J. (2003). Qualitative psychology - a practical guide to research methods. London, UK: Sage Publica-
tions Ltd.
Thomas, D. (2006). A general inductive approach for analyzing qualitative evaluation data. American Journal
of Evaluation, 27, 237–246.

Author biographies
Mandy Abbott has been a consultant child and adolescent psychiatrist in Community CAMHS in Newcastle
upon Tyne for 3 years; her interests include ASD, medical education and family therapy.

Paul Bernard has been a consultant child and adolescent psychiatrist in the Darlington CAMHS team for 15
years; his interests include narrative therapy and mindfulness-based approaches.

Jenny Forge has been a consultant child and adolescent psychiatrist in the Durham Dales CAMHS team for
15 years; her interests include the clinical application of the Mindfulness in Schools Project.