INT J LANG COMMUN DISORD, MAY–JUNE 2016,

VOL. 51, NO. 3, 328–338

Research Report
Negotiating knowledge: parents’ experience of the neuropsychiatric
diagnostic process for children with autism
Emilia Carlsson†, Carmela Miniscalco†‡, Björn Kadesjö‡ and Katja Laakso†
†Division of Speech and Language Pathology, Institute of Neuroscience and PhysiologyUniversity of Gothenburg, Gothenburg,
Sweden
‡Gillberg Neuropsychiatry Centre, Institute of Neuroscience and PhysiologyUniversity of Gothenburg, Gothenburg, Sweden
(Received November 2014; accepted August 2015)

Abstract
Background: Parents often recognize problems in their child’s development earlier than health professionals do and
there is new emphasis on the importance of involving parents in the diagnostic process. In Gothenburg, Sweden,
over 100 children were identified as having an autism spectrum disorder (ASD) in 2009–11 through a general
population language and autism screening of 2.5 year olds at the city’s child healthcare centres.
Aims: To increase understanding of parents’ lived experience of the neuropsychiatric diagnostic process, i.e. the
period from the initial screening at age 2.5 years to the 2-year follow-up of the ASD diagnosis.
Methods & Procedures: A qualitative design, a phenomenological hermeneutic method, was used. Interviews were
conducted with parents of 11 children who were diagnosed with ASD 2 years prior. The parents were interviewed
about their experiences of the neuropsychiatric diagnostic process, i.e. the time before the screening, the time
during the neuropsychiatric multidisciplinary evaluation and the time after diagnosis. The interviews lasted for
45–130 min, and an interview guide with set questions was used. Most of the interviews were conducted at the
parents’ homes.
Outcomes & Results: The essence that emerged from the data was negotiating knowledge, and the three themes
capturing the parents’ experiences of going through the process of having their child diagnosed with ASD were
seeking knowledge, trusting and challenging experts, and empowered but alone.
Conclusions & Implications: The parents expected intervention to start directly after diagnosis but felt they had to
fight to obtain the resources their child needed. After the process, they described that they felt empowered but still
alone, i.e. although they received useful and important information about their child, they were left to manage
the situation by themselves. As for clinical implications, the study points to the necessity of developing routines
to support the parents during and after the diagnostic process. Recommended measures include developing a
checklist outlining relevant contacts and agencies, establishing a coordinator responsible for each child, dividing
the summary meeting at the clinic into two parts, making more than one visit to the preschool, and providing a
parental training programme.

Keywords: autism spectrum disorder (ASD), diagnostic process, parents, phenomenology.

What this paper adds?

What is already known on this subject?
Previous studies have shown that parents find the diagnostic process to be lengthy. They also feel overwhelmed by
the sudden information load. Parents can feel alienated from society due to their child’s diagnosis.

Address correspondence to: Emilia Carlsson, Division of Speech and Language Pathology, Institute of Neuroscience and Physiology, University
of Gothenburg, Box 452, SE-405 30 Gothenburg Sweden; e-mail: emilia.carlsson@neuro.gu.se
International Journal of Language & Communication Disorders
ISSN 1368-2822 print/ISSN 1460-6984 online  C 2016 Royal College of Speech and Language Therapists

DOI: 10.1111/1460-6984.12210
Negotiating knowledge
What this paper adds?
The parents in our study whose children had undergone a pre-diagnosis screening procedure thought that the
diagnostic process in general had been effective, quick and satisfactory, even if minor procedural changes are
suggested. After the diagnosis the parents felt empowered but still alone since they struggled and fought for their
child’s rights to help and support.
Introduction
Autism spectrum disorder (ASD) is a developmental dis-
order characterized by impairments in social interaction
and communication as well as restricted interests and
repetitive behaviour (American Psychiatric Association
(APA) 2013). Nygren et al. (2012) recently found the
prevalence of children with ASD in Sweden to be about
1%. Many of these children are identified due to absent
or delayed language development, or loss of meaningful
words during their second or third year of life (Dahlgren
and Gillberg 1989, Miniscalco et al. 2006). Recent stud-
ies report that early identification is important in or-
der to implement individual intervention programmes
aimed to improve the outcome of ASD (Eikeseth 2009,
Magiati et al. 2007, Nygren et al. 2012), and longitudi-
nal studies have shown that an ASD diagnosis at ages 2–4
years is relatively stable over time (Gillberg et al. 1990,
Kleinman et al. 2008, Lord 1995, Lord et al. 2006).
A questionnaire study by Howlin and Moore (1997)
covering parents of over 1200 children in the UK found
that parents often recognize their child’s difficulties early,
about 33% already at 1–2 years of age. Early parental
recognition is found in other recent studies as well
(Chamak et al. 2011, Mindence and O’Neil 1999). In
Howlin and Moore’s (1997) study the parents’ over-
all satisfaction with the diagnostic process varied with
the age at which the child was diagnosed. The satisfac-
tion ratings were particularly low among parents who
had waited for a clinical examination until their child
was over 5 years old (Howlin and Moore 1997). Cur-
rently, parents still have to wait disproportionately long
time—about 3.5 years—before they got an ASD diag-
nosis (Crane et al. 2015).
A study by Keenan et al. (2010) of 95 parents of
children diagnosed with ASD from Northern Ireland
found that these parents thought the diagnostic process
was too long and that they had received too much infor-
mation at once. Parents have also reported sometimes
feeling they could have been better taken care of (Reed
and Osborne 2012). Most parents also seem to wish for
a quicker and easier process (Goin-Kochel et al. 2006,
Mansell and Morris) and better trained teachers and
professionals who know more about ASD (Osborne
and Reed 2008). Parents of children with Asperger
syndrome experience significantly longer delays and
greater frustration in their search for an ASD diagnosis
(Howlin and Asgharian 1999).
329
Thus, it is essential to have good and appropriate
resources available to support parents of children with
ASD (Hall and Graff 2011). Consequently, increasing
the knowledge about how parents experience the screen-
ing procedure and the neuropsychiatric diagnostic in-
vestigation is important and valuable in order to design
better targeted and more comprehensible assessments
and interventions and develop the most effective and
well-adjusted approach to these families and children
(Kearney and Griffin 2001, Nygren et al. 2012).
Autism detection and intervention in early life—the
AUDIE project
From 2009 to 2011 over 100 children in Gothen-
burg, Sweden, were identified as having ASD through
a general population language and autism screening of
2.5 year olds at the city’s child healthcare centres (CHCs)
(the AUDIE project: AUtism Detection and Interven-
tion in Early life). This screening was the first step in
a process to identify apparently healthy children who
were at risk of having a language disorder or ASD. More
than 95% of almost six thousand 2.5 year olds partic-
ipated in the screening procedure each year (Arvidsson
et al. 2011). (For more details about the screening pro-
cess, see Kantzer et al. 2013, Nygren et al. 2012, and
Westman Andersson et al. 2013a.) This screening is now
offered generally at CHCs in our area and targets almost
100% of all 2.5-year-old children.
At the CHC children identified with language diffi-
culties were referred to the speech and language clinic,
and the children who were suspected of having ASD
were referred to the Child Neuropsychiatry Clinic
(CNC), a local, regional, and nationwide clinic for as-
sessment of ASD. The children suspected of having ASD
were examined within 3 months by a multidisciplinary
team consisting of a speech and language pathologist,
a neuropsychologist, a special education teacher, and a
doctor with several years of training in child neuropsy-
chiatry. All professionals met with the children and their
parents individually on one to three occasions over a
period of 1–2 months. A second examination was per-
formed 2 years later.
The comprehensive assessment at CNC was
completed with one or both parents and covered the
child’s developmental history, family genetics and social
background, as well as the child’s current problems.
330
All children underwent several assessments at the
clinic: a medical–neurologic–psychiatric examination,
a neuropsychological examination, a language exami-
nation focusing on expressive and receptive language,
and the Autism Diagnostic Observation Schedule
(ADOS) (Lord et al. 2000). In addition, a preschool
observation was performed by the special education
teacher at the child’s preschool (Westman Andersson
et al. 2013b).
The criteria of the DSM-IV (1994) were used to
check for ASD and other developmental disorders at
a diagnostic case conference, which was held with all
involved specialists upon completion of all assessments.
The assessment team made consensus clinical diagnoses
according to said criteria and then met the parents on
a separate occasion, called the summary meeting, to
inform them about their child’s diagnosis. In addition,
the team held a separate meeting with the diagnosed
child’s preschool teachers.
The aim of the present study is to gain an under-
standing of the parents’ lived experiences of the neu-
ropsychiatric diagnostic process, i.e. the period from
the initial screening at age 2.5 years to the follow-up
of the ASD diagnosis 2 years later. During this time
the parents and children had contact in various ex-
tents with the habilitation centres for different types of
intervention.
All parents described in the present paper partici-
pated in the following neuropsychiatric process: (1) the
screening procedure at the CHC, (2) the waiting period
between screening and the clinical assessment, (3) the
comprehensive assessment, (4) the multi-professional
summary meeting with the parents, and (5) the infor-
mation meeting with the preschool and the child habil-
itation unit. In contrast to previous studies on parents’
experience of the diagnostic process, our study is based
on children with suspected ASD identified through a
screening programme and not on a clinical sample.
Methods
This is a qualitative study based on in-depth semi-
structured interviews (Kvale and Brinkman 2009). Since
the informants’ experiences need to be described and in-
terpreted in order to understand and capture fully the
essence of the underlying meaning of lived experiences,
a phenomenological hermeneutical method was used.
This method will allow us to gain an understanding of
the lived experiences of mothers and fathers of children
with ASD who have gone through a neuropsychiatric
investigation. It focuses on the human conscious and
the lived experience and used to give the researcher an
ability to imagine the other persons experiences. The
purpose of the method is to capture the essence of a
certain phenomenon (Lindseth and Norberg 2004).
Emilia Carlsson et al.
Participants
The 11 informants, comprising both mothers and fa-
thers, were recruited from the larger AUDIE project de-
scribed above. Parents whose children had their 2-year
follow-up appointment at CNC in Gothenburg during
the time of present study were invited to participate.
The interviews were held from February to June 2013,
and the families were consecutively recruited. The study
was approved by the Ethics Review Board at Sahlgrenska
Academy, Gothenburg; all informants provided written
informed consent.
Participant demographics and descriptions of the
children with ASD are presented in table 1. Twelve par-
ents were initially asked to participate in the study, but
one family ended up going abroad and was therefore un-
able to participate. Two informants had their permanent
residence in Sweden but were originally from another
country. A high proportion (n = 9) of the participants
had a university degree. Four informants reported that
they had separated within 2 years of their child’s ASD
diagnosis, i.e. during the course of the study. The chil-
dren were 2–5 years old at diagnosis. Three families had
more than one child with ASD; the number of children
within each family ranged from one to three.
Data collection
Interview data were collected using a semi-structured
interview guide. The four members of the research
group—a paediatrician and three speech language
pathologists (SLP) (two working with children and one
with special knowledge of the qualitative method)—
developed the interview guide by outlining the objec-
tives of the study, reviewing the literature and using
clinical experience. The interview guide included open-
ended questions divided into three categories (before
diagnosis, the diagnostic process and post-diagnosis)
designed to capture the richness and nuances of experi-
ences, with a focus on the participant perspective (Kvale
and Brinkman 2009); e.g. Did you have concerns about
your child’s development? (before diagnosis); What was
it like to get into a specialist unit? (diagnostic pro-
cess); and Is there anything you wish you had received
more support and/or help with? (post-diagnosis). The
responses were explored using follow-up questions such
as Can you tell me a bit more about that?; and How
did it feel? All 11 interviews were carried out by the first
author (E. C.). The interviewer had not participated in
the assessment at CNC, which allowed for the respon-
dents to talk more openly about their experiences. One
parent from each family participated (nine mothers and
three fathers) in all but one interview, in which both par-
ents participated. The interviews lasted 45–90 min and
the informants could, at their own convenience, choose
Negotiating knowledge 331
Table 1. Biographical description of informants and their children with ASD (n = 11)

Description of parents/informants Child with ASD

Child with Total number of
Informant Mother Highest Marital ASD (age, Diagnosesa children in the
(age, years) Sex tongue education Employment status years) Sex (IQ levelb ) family (with ASD)
1 (about 30) F Swedish 12th grade Cleaner Married (4) M ALC (average) 2 (2)
2 (36) F Swedish Academic degree Therapist Married (5) F AD (BIF) 3 (1)
3 (39) F Swedish Academic degree Teacher Married (5) M ALC (average) 2 (1)
4 (44) F Spanish Academic degree Social worker Separated (4) F AD (average) 3 (2)
5 (45) F Swedish Academic degree Home duties Married (5) M AD (BIF) 2 (2)
6 (39) F Swedish/ Academic degree Nurse Self-employed Married (6) M AD (average) 2 (2)
(37) M English
7 (31) M Swedish Academic degree Carpenter Separated (5) F AD (IDD) 1 (1)
8 (37) F Swedish Academic degree Pre-school teacher Separated (7) M AD (IDD) 2 (1)
9 (35) F Swedish Academic degree Teacher Married (4) M AD (IDD) 2 (1)
10 (46) F Swedish 12 grade Disability pension Separated (7) F AS (average) 1 (1)
11 (33) M Swedish Degree Technician Married (5) F AD (IDD) 2 (1)
Notes: a AD, autistic disorder; ALC, autistic-like condition (i.e., atypical autism/pervasive developmental disorder not otherwise specified (PDDNOS); AS, Asperger syndrome.
b
Borderline intellectual functioning (BIF) = IQ of 70–85, intellectual developmental disorder (IDD) = IQ < 70; average = IQ > 85.
F, female; M, male.

whether to meet in their homes or at the interviewer’s
office at the University of Gothenburg. Eight interviews
were performed in the participants’ homes and three at
the university. The interviews were held in Swedish and
audio recorded and supporting notes were taken imme-
diately after the interview to enhance the data collection
and to document a reflective summary of each inter-
view. Data saturation occurred after the 11th interview,
i.e. no new understandings (themes relevant for the aim
of the study) emerged (Creswell 1994). The interviews
were transcribed verbatim by either the first author or a
hired transcriptionist.
Data analysis
The interview texts were interpreted following a phe-
nomenological hermeneutic method (Lindseth and
Norberg 2004) where the interpretation of the text en-
ters the ‘hermeneutical circle’, i.e. a movement from the
small parts of the text to the whole and back again.
The interpretation included three distinct phases: naı̈ve
understanding, structural analysis and comprehensive
understanding (interpreted whole). The interview tran-
scripts were read through separately several times to
grasp the meaning of the whole. The texts were read in
an open-minded manner to obtain a naı̈ve understand-
ing (without preconceived thoughts) of the meaning of
the parents’ lived experiences of the neuropsychiatric
diagnostic process. The next part of the interpretation
included using a thematic structural analysis, i.e. seeking
to identify and formulate themes in accordance with the
aim of the study and the naı̈ve understanding. The texts
were reread and divided into meaning units, which were
then condensed into shorter sentences or single words
to capture the essential meaning. The software pack-
age N-Vivo was used to organize and help analyze the
interview transcripts. The condensed meaning units
were read several times and reflected upon to compare
differences or similarities between them and across inter-
views. They were thereafter coded and grouped. Prelimi-
nary interpretations were discussed with all authors, and
all field notes were reviewed. The coded and grouped
meaning units were then abstracted into themes and fur-
ther into subthemes. The coded data were continuously
compared with the naı̈ve understanding of the text. The
understanding of the parents’ experiences was based on
an analytic process where there was a constant movement
between understandings and explanations between the
detailed parts of the text and back to the whole in or-
der to reach a comprehensive understanding. There was
continuous discussion among the authors during the
analytic process to ensure trustworthiness and credibil-
ity of the results (Malterud 2001). In the presentation
of findings, each theme is followed by subthemes. To
stay close to the lived experience, we also allow the in-
formants’ voices to emerge through quotations from
the interviews. Since the interviews were conducted in
Swedish, an English translation of the quotations is used
in the present study.
Results
A number of themes relevant to the aim of the study
emerged from the analysis. The essence pervading all
themes and subthemes was found to be negotiating
knowledge, where the informants describe a process of
first having knowledge and expertise of their own child
and then having to re-evaluate their experience and deal
with the opinions of the clinical experts after referral.
Table 2 shows the three main themes, i.e. seeking knowl-
edge, trusting and challenging experts, and empowered
but alone, that describe the parents’ experiences before,
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Table 2. Essence, themes and subthemes
Essence Negotiating knowledge
Themes Seeking knowledge Trusting and
challenging experts
Noting the child’s Meeting the experts
Subthemes
disabilities The assessment—
Feeling concerned an unfamiliar
situation
Logistic challenges
Divergent emotional
reactions
Need for information
during and after the neuropsychiatric diagnostic process,
respectively. In what follows, numbers in parentheses re-
fer to interviewees within this paper in order to ensure
their anonymity.
Seeking knowledge
The first theme concerns the time before assessment
and referral, when the parents and/or the professionals
at the CHCs identify some atypical behaviour in the
child and therefore seek an explanation. This theme
consists of two subthemes: noting the child’s disabilities
and feeling concerned. These subthemes describe the
parents’ experiences during their child’s early years, their
concerns and their path to referral to CNC.
Noting the child’s disabilities
Some parents felt that their child was different compared
with other children, but they still felt that everyday life
was working and therefore did not perceive urgency of
the situation or for a potential diagnosis: ‘I was sure
she would eventually get some diagnosis. I have never
worried about it though’ (2). Parents noticed the dis-
abilities early on and some saw similarities with relatives
with autism: ‘I expressed early on that I suspected he
had some form of autism because it runs in the family’
(1). There were various signs of atypical development
that made the parents worry, and several described that
delayed language was one such sign.
Feeling concerned
They described sensing that something was different
with their child, and this feeling persisted as the child de-
veloped. Parents had noticed difficulties in their child’s
development in comparison with same-age peers. De-
scription made by parents: ‘Keeping a close eye on one’s
child’ (1) and ‘Or especially my husband, who was more
attentive and said that something wasn’t right’ (3). Par-
ents described that they worried about their abilities as
a parent since the child was completely different from
Emilia Carlsson et al.
other children: ‘So I thought something was wrong with
me [ . . . ] because I could not understand him’ (4).
Empowered
but alone Trusting and challenging the experts
Timing of resources
Expecting support
The second main theme that emerged from the anal-
Advocating the child’s ysis, trusting and challenging experts, concerned the
needs assessment time, i.e. the 1–2 months between the first
Handling the child’s
disability appointment and the diagnosis. This theme describes
Dealing with the parents’ experiences during the neuropsychiatric as-
transitions
Unequal resources
sessment and has the following subthemes: meeting the
experts, the assessment—an unfamiliar situation, logis-
tical challenges, divergent emotional reactions, and need
for information.
Meeting the experts
The parents described that they needed to trust and
adjust to the professionals’ way of responding to the
child even if they did not always believe it was suitable
for their particular child: ‘Um, today I would have asked
if we can sit somewhere else because this is not going to
work’ (6). Some parents said they had been seeking an
explanation to their child’s development, and at CNC
they found that they had come to the right place: ‘I
remember the moment we opened the door at CNC, it
was like, just a big sun, and I felt like, wow, we have come
to the right place’ (10). Some parents had been seeking
an explanation for their child’s abilities and disabilities
and felt relieved when they finally came to CNC: ‘It
felt like there was a tremendous amount of knowledge
there and I felt already the first time that people there
knew what they were talking about’ (2); ‘It may sound
like a cliché, but it feels like coming home’ (5). Parents
described that they did not want to bother the clinicians,
which was one explanation to why they did not tell them
when they felt that the clinicians’ handling of their child
was not entirely appropriate.
The assessment—an unfamiliar situation
The parents met the experts, i.e. the clinicians, during
the assessment at CNC. The experts interacted with the
child in several different ways depending on the child’s
personality and the assessment performed and then they
provided a description of the child. The parents de-
scribed the assessment in mostly positive terms. They
felt that they were in good hands and that the people at
the clinic acted professionally and had a lot of experience
with ASD: ‘We were pleased with both the response and
the approach and that we were, we were very surprised
it went so fast’ (7); ‘You feel well taken care of’ (4). The
assessment is an unfamiliar situation not only for the
parents but also for the child. Some parent described
that the daughter was noticeably affected for a couple
of months after the assessment: ‘After the examination,
Negotiating knowledge
she was noticeably affected and out of balance for a few
months’ (4).
Some parents felt that the experts did not have a
chance to see the child’s full potential, since the assess-
ment was done in an environment unfamiliar to the
child. Others described that they did not feel the assess-
ment and the way the clinicians treated and talked to
the child were optimal. Being at a special unit forced
the parents to try to adapt to situations they were un-
comfortable with, and their gut feeling told them it was
difficult for their child as well: ‘It didn’t feel so great
[ . . . ] ever since the beginning I’ve felt like I person-
ally would not have chosen these people’ (11). Some
parents felt it was difficult to bring concerns to the ex-
perts’ attention since they felt inferior and believed that
the medical experts knew what was best. The experts’
descriptions may or may not be consistent with the par-
ents’ own experiences: ‘Maybe they are good at it but I
don’t always agree with what they say, that’s what it feels
like [ . . . ] I see him in so many other situations than
they do, so it doesn’t feel like the way they describe him
always applies’ (9).
Logistical challenges
Parents described that once the assessment started it all
proceeded quickly and smoothly, despite the numerous
appointments: ‘So it went very quickly and I under-
stand now that we’ve been luckier than others who have
waited for, like, years for an assessment’ (10). Some
parents described that the assessment took longer than
planned due to sickness both among staff at the clinic
and in the family. Another parent described the process
as smooth because of the geographical proximity. Some
parents thought that the administration of paperwork
and referrals did not work optimally, i.e. that there were
problems with the written communication between the
families and the clinic, e.g. concerning a referral that did
not leave the clinic and the parent therefore needing to
call several times, leading to delays: ‘Dealing with the
paperwork is certainly not CNC’s biggest talent as pa-
pers get stuck, papers don’t go out, and I have to call
people myself and set up meetings’ (2).
Divergent emotional reactions
After the comprehensive assessment at the clinic, the
parents were left to deal with the emotions and practical
matters that followed the ASD diagnosis, as well as with
all the information they had received. Many different
emotional reactions were described. Some had positive
feelings—‘Finally!’—and others only had a strong feel-
ing of sadness even though they would never want to
change their child: ‘I wouldn’t trade it for anything in
the world because X and X are like, autistic or not, they
333
are’ (1). Some parents felt a sense of relief: ‘I was re-
lieved when I left CNC with this in my hand, I just
felt, like, Yes!’ (10). Others said that it was difficult to
prepare themselves even though they knew what was
coming—that something about their child’s develop-
ment was atypical: ‘That’s when everything fell apart
and I just broke down and cried. I felt like I just couldn’t
do it’ (1); ‘She has autism [ . . . ] and I don’t know how
you can prepare for that?’ (2).
Need for information
At the end of the assessment period, the parents received
extensive information about the child’s development at
a separate summary meeting, which was described as
helpful. New questions emerged: The parents were left
wondering what a habilitation centre was and why they
should go there—information that would have been
valuable to get at the summary meeting: ‘We were sup-
posed to get support at the habilitation center, what do
you do there and what kind of help do you get there’
(9). The parents received the most valuable information
about their child at the summary meeting, but the in-
formation load was huge, described as: ‘A fountain of
information’ (1). In order to absorb and process this
massive amount of information, they felt a need to be
able to formulate and ask relevant questions. To some,
the new knowledge about ASD and their child’s needs
brought on feelings of no longer knowing their own
child. However, later on in the process many parents
discovered that nothing fundamentally had changed.
Their child was the same as before and they as parents
knew their child best: ‘Then I got home to the same
girl and it was not as if she sat and rocked and hummed
in a corner just because they had said that,’ ‘I mean, I
had always known she was different, and it really doesn’t
matter what it is called’ (2).
Empowered but alone
The third and final theme, empowered but alone, de-
scribes the parents’ experiences post-assessment, once
the parents and children had gone through the neu-
ropsychiatric process. The parents left feeling they had
lots of new information plus the information they had
already received before the assessment, and now they
had to process it all. Even though they had good knowl-
edge of ASD and their child’s needs, they needed to
regain the role of being the expert on their own child,
since after all they were the ones who were handling
the child in everyday life and all the contacts with other
actors, such as the city, school, and social services. The
following subthemes emerged: timing of resources, ex-
pecting support, advocating the child’s needs, handling
334
the child’s disability, dealing with transitions, and un-
equal resources.
Timing of resources
The parents identify timing of resources as important
when it comes to receiving information and interven-
tion. They felt the time for questions in relation to the
information that came out of the assessment was non-
existent. It would have been valuable for the families to
get two visits: one where they could receive the results of
the assessment and another where they could ask ques-
tions and receive more specific and practical informa-
tion. This would have given them more time to digest
the new information and figure out questions. Some
parents suggested introducing a checklist or a coach to
assist decision making. They felt they had to wait for a
long time before they received further help. They also
reported a need for personal counselling, but had a hard
time prioritizing it since their focus was entirely on their
child at that time. A few years later, however, they real-
ized that it would have been valuable. Some of them had
received counselling privately, and some were offered but
declined a counselling session: ‘Well, it depends on what
kind of person you are, as for me, for me to call a coun-
sellor, I would need to be at the point of breakdown, that
is how bad I have to feel’ (4).The parents have so much
going on that their own health issues are overshadowed;
however, some seek help for themselves at a later point.
Individual differences in need for support also appeared:
‘Well I think it’s harder for me than for my husband and
I think it is because he is better at repressing it than I
am [crying and laughing]’ (9).
Expecting support
Some parents wished somebody else would set out the
course, e.g. tell them what intervention to start with.
They would have liked some guidance about how to
proceed with the new information they received at the
assessment at CNC. In addition, parents lacked precise
information about which contacts to make and what
paperwork to complete: ‘A week or two after getting on
your feet again so that you don’t have to just sit there
for three months and search the internet for what it
means’ (3). The parents’ need for support in the first
few months after the diagnosis is pointed out as impor-
tant: ‘This was very nice and important, a beautiful gift
dropped on your lap, here you are’ (4). Without this
support they tend to rely only on information found
online. Possibility to acquire information on their own
is reported as both important and valuable, but some-
times it is difficult to filter and critically appraise all
the online information. The process that starts when
the assessment is over includes the feeling of having a
Emilia Carlsson et al.
new view of the child, a view that changes the par-
ents’ way of planning daily life and deciding what re-
sources to request: ‘It’s like you don’t have time to deal
with your thoughts, or to formulate questions, before
you’re suddenly being transferred to habilitation ser-
vices (11). Some parents thought that they themselves
as parents primarily needed intervention: ‘It’s the par-
ents who first and foremost need help coming to grips
with things’ (4). Others, however, described that if you
have had to wait a long time for the diagnosis, you expect
that the child should be prioritized and get appropriate
intervention.
Advocating children’s needs
The parents report that they continuously had to fight
for their children: ‘I think it’s frustrating, you have to
constantly fight, all the time, for support in school, for
support in preschool’ (3). They say they have to fight
for their child’s rights with authorities in every new
situation and conclude that they continuously advocate
their child’s needs all along the child’s way through the
school system.
The constant struggle for resources and help from
authorities was found to be tiresome, frustrating, and
time consuming. The parents felt they needed to spend
a lot of time making things work in preschool, and
after a few easier years there the child started school
and the work started all over again: ‘Then we have to
pull all the strings again, not one single time but 20–
30 times for things to happen’ (3). It is not just all
the extra time it takes for a parent to attend to a child
with special needs (some children need adult attention
24 hours a day) that the parents perceive as demand-
ing but also the time it takes to advocate their child’s
needs: ‘It feels like, or that’s actually what it’s like, ev-
erything is on the parents, you have to fight for every
inch’ (9).
Handling the child’s disability
Parents felt they had to plan every minute of every day,
which required constant work for the entire family: ‘It
is almost like playing Tetris, actually’ (1). Some parents
described that they or their partners had suffered from
stress-related illnesses. Some said they had worked too
long hours at work during the time of the diagnostic
process as a coping mechanism, to keep focus on work
to escape the difficulties at home. This strategy usually
did not work well in the long run and was replaced
with a perceived need to slow down: ‘Because, I thought
things have to calm down [ . . . ] before I start thinking
about my career’ (7).
Negotiating knowledge
Dealing with transitions
During the transition between CNC and habilitation
services, the parents again felt time pressure and some
level of abandonment. After having gone through the
assessment, the parents expected support from profes-
sionals, help with their child and the child’s needs: ‘And
then it’s time to move on to the next place, to habilitation
services, um it’s like you don’t have time to digest things
you didn’t have time to come up with questions before
suddenly you were in a meeting doing the transition’
(11). The parents wanted to start the interventions as
soon as possible. Some parents were disappointed with
the services offered, feeling that they needed to know
more about what different intervention methods were
available and that they were responsible for finding the
right solution from a large smorgasbord presented by
the habilitation centre: ‘Well, they say; ‘What do you
want, we have this smorgasbord?’ and what hell do I
know?’ (4). Parents differ in how they react, in how they
handle the situation, and in when and what way the re-
action shows: What clearly emerged however was a wish
for more individually tailored intervention in this new
situation: ‘It’s really a whole new world that opens up
that you don’t know anything about’ (3).
Unequal resources
Differences in resources offered between municipalities
but also between municipal districts emerged during the
interviews. If a family lived in the ‘right’ place, the child
had access to suitable care and support; if not, the family
had to accept less or move to another part of the city
or region. Several of the parents had in fact moved, e.g.
in order for the child to attend the most appropriate
preschool: ‘And then my partner had gone through this
and there were more resources and more opportunities
out in xx so I think we should move there’ (1).
Discussion
The present study aimed to describe parental experiences
of the neuropsychiatric diagnostic process of children
diagnosed with ASD 2 years earlier. The essence that
emerged from the interviews was negotiating knowledge
(figure 1), which highlights the process the parents went
through, i.e. a process concerning how to handle knowl-
edge and expertise, the parents continuously negotiating
their own prior and current knowledge, and the exper-
tise from different healthcare actors, while trying to put
their child’s needs in focus. This findings is similar to
previous quantitative studies (Crane et al. 2015, Howlin
and Moore 1997) based on clinical samples. Our chil-
dren were recruited from a screening population based
sample and therefore one could speculate if the differ-
335
Figure 1. Essence and themes
ence in the recruitment process would capture a greater
heterogeneity of experiences of the diagnostic process.
This was not the case. Another difference is that the
present study is qualitative, in order to capture a rich
and more nuanced picture of the parents opinions. Cur-
rently in the UK the new legislation on the Children
and Families Act has brought a new emphasis on in-
volving parents and talking account of their views in the
assessments process.
The process started with the parents seeking exper-
tise. Thus, the first of the three identified themes was:
(1) seeking knowledge, where the children went through
a screening procedure and the parents described that
they started seeking further information. After meet-
ing with the experts at the CNC, the parents obtained
new knowledge regarding their child that they needed
to cope with. The second theme was (2) trusting and
challenging experts, where the parents described their
feelings concerning the assessment and the summary
meeting with the experts at the clinic. The third theme
describes the last part of the process, where the parents
find themselves (3) empowered but alone. The parents
feel that they have obtained a lot of valuable and em-
powering information yet still feel left alone with a lot of
emotions and many decisions. Their struggle and need
for advocating their child’s needs continue, almost in a
circular fashion.
Parents often recognize early on that their child dif-
fers in development compared with peers (Chamak et al.
2011, Howlin and Moore 1997, Minnes and Steiner
2008, Ozonoff et al. 2009, Westman Andersson et al.
2013a). This process starts in the families when they or
someone else notices that the child shows signs of atypi-
cal development. Some parents in our study felt that the
diagnostic process was effective, quick, and smooth, and
described that they were ‘seen’ and treated well at the
clinic. This is in contrast to other studies (e.g. Chamak
and Bonniau 2013) that found that the parents were
dissatisfied with the diagnostic process, e.g. it took too
long, the words used were difficult to understand, and
the parents were not treated professionally. In our study,
336
the parents described that they received a lot of infor-
mation all at once at the summary meeting and that this
information was relevant and valuable, but that they did
not have time to formulate and ask questions. This is
consistent with several other studies that have found that
parents can get overwhelmed by the sudden information
load (Abbott et al. 2013, Osborne and Reed 2008).
Divergent emotional reactions was one of the sub-
themes, which is consistent with other studies that also
have shown that parents often have mixed feelings sur-
rounding the diagnosis. Even if parents already suspected
that their child had a disability, they may react to the
diagnosis with both shock and grief. Other studies have
found that if parents have already noticed the disability,
they may feel relief and happiness as the diagnosis con-
firms their thoughts and concerns (Russell and Norwich
2012, Osborne and Reed 2008).
Our study indicates that the parents’ process to ob-
tain a diagnosis for and an explanation to their child’s be-
haviour is quite lengthy. Parents sometimes start think-
ing of their child’s abilities and disabilities even before
a clinical assessment (Howlin and Moore 1997, Mi-
dence and O’Neill 1999). Further, the current study
indicates that lengthy diagnostic processes can increase
the parents’ expectations of getting adequate support in
connection with the assessment.
It is important to ask the parents directly about their
experiences and to give them enough time to thoroughly
describe their situation. We found that the parents in our
study did have a lot to share with us, and it seems to
be important that the parents have someone who lis-
tens to their stories and acknowledges their experiences.
The parents in our study do show a lot of similarities
with other parents of children with ASD, but they also
differ in important ways since the children diagnosed
with ASD comprise a very heterogenic group. Our find-
ings show that it is important to handle every child and
family individually, as one intervention does not suit ev-
ery child and family in this group, i.e. the suitability of
interventions depends on the parents’ preconceptions,
their social and economic resources, the child’s disabil-
ities and abilities, society, and where the family lives
(Minnes and Steiner 2008). What is also clear from the
parents’ descriptions is that the timing of intervention
is essential, both for being able to accept the interven-
tion for their child and for being able to follow through
with it (Hodge and Runswick-Cole 2008). When the
CHC identifies a child’s condition at a general screen-
ing procedure—e.g. suspected ASD—the expectations
of getting support and help rise and parents seems to ex-
pect immediate intervention. Relevant and well-timed
information is important also because of the massive
amount of information parents can find on the internet,
i.e. information that is not always optimal for parents at
this point (Huws et al. 2001).
Emilia Carlsson et al.
An important finding in this study is the significant
regional differences in resources available for families
with ASD. This has also been found in previous stud-
ies (Howlin and Moore 1997). Sweden offers free child
healthcare, which might be an advantage compared with
other countries. However, the parents point to inequali-
ties in social services and schooling between city districts,
i.e. you have to live in the ‘right’ area of a city if you have
a child with autism in order to have access to suitable
preschools and intervention programmes. Other coun-
tries with socialized medicine display similar regional
differences (The Bercow Report 2008).
In this study, parents reported to have received im-
portant and valuable information during the assessment
process, yet in the end they felt left alone—empowered
but still alone. That is, even though the parents felt that
the experts supported them with new knowledge and
new insights, they felt left alone in the struggle with au-
thorities such as the municipality, schools, and social ser-
vices, in addition to handling their own and their fami-
lies’ emotional reactions. Reed and Osborne 2012 found
that a large group of parents felt they did not receive any
help at all and would have wanted at least one follow-up
meeting at the clinic. This is in contrast to our find-
ings, where although the parents felt alone, at least they
felt they had received support. The feeling of loneliness
described in our study is consistent with some previous
research where parents have described feelings of ‘living
in a world of their own.’ However, the findings in the
present study are in contrast to Woodgate et al. (2008),
where the parents felt a lot more marginalized and iso-
lated than suggested by our interviews. Pellicano et al.
(2014) focused on parents’ views and thoughts of what
autism research should focus on and found the issue of
how to live with autism to be high on the list. Also our
findings point in this direction, since the parents in our
study described feeling empowered but alone, i.e. there
is a need for high-quality transitions between health in-
stances and a subsequent need for continuous support.
Several parents described their daily life as a struggle
filled with many appointments and care needs to attend
to, which makes it necessary to live a highly structured
daily life. They also found it difficult to identify and
get their children into appropriate schools. The theme
found in the present study about advocating the child’s
needs has also been found in other studies (Paradice
and Adewusi 2002). In another study where Parsons
et al. (2009) compared the views of educational provi-
sion between parents of children with ASD and parents
of children with other disabilities in the UK, similar
results concerning parents’ struggle and dissatisfaction
with schools and municipal services were found. They
also found that parents of children with ASD had sig-
nificantly more concerns than parents of children with
other disabilities (Parsons et al. 2009). The descriptions
Negotiating knowledge
in the present study reveal that several parents have ex-
perienced stress-related illness, often as a result of poor
coping with the situation. For example, some parents
had coped by working more than before, and after a
while they became sick due to stress since their child
needed a lot of support. This finding is consistent with
other studies (Safe et al. 2012, Osborne and Reed 2008).
Limitations
Since a qualitative research method was used, general-
ization of the results cannot be expected. However, the
interviews were conducted until the point of saturation,
which should give the findings some credibility for this
particular group. The trustworthiness of the analysis
was assured through continuous discussions among all
authors over a long period; the presented findings are
our interpretations of the interview transcripts. The
interviews were initially conducted and analyzed in
Swedish. The quotations were translated to English by
a professional English speaking translator in order to
get as close to the parent’s voices and stories as possible
when preparing this manuscript. However, even so this
can be a limitation. Another limitation of our study is
that we have a proportionally larger group of parents
with higher education than in the general population.
Furthermore, we had only a few multilingual parents,
and a broader social sample might have added some
more perspectives of the experiences. On the other
hand, one strength of the study is that the interviews
were rich and nuanced and included both women and
men, as well as families with single parents and two
parents and one or several children with disabilities.
The interviews were conducted 2 years post-diagnosis,
which can affect the parents’ memories of how they
perceived the process at the clinic this can be seen as
a limitation but also as a strength since at that point
they had had some time to recover from the immediate
crisis phase.
Clinical implications
The findings suggest that it is important for profession-
als to take parental concerns about a child’s atypical
development seriously and provide adequate and well-
timed support. It is also important to develop routines
for parental support. Another finding was that the par-
ents in the present study thought that the process from
screening to diagnosis went quickly and was effective,
informative, and overall satisfactory. Further, the find-
ings point to the importance of developing routines for
parental support during and after the neuropsychiatric
diagnostic process, e.g. a checklist outlining key persons
that the parents should contact, dividing the summary
337
meeting into two parts, and providing a training pro-
gramme for parents. The aim of such a programme
would be to increase the knowledge of ASD in order to
better link the assessment at the clinic to the subsequent
interventions at the habilitation centre, especially since
many parents expect intervention to start immediately
after the diagnosis.
Acknowledgement
Declaration of interest: The authors report no conflicts of interest.
The authors alone are responsible for the content and writing of the
paper.
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