Social Work in Mental Health

ISSN: 1533-2985 (Print) 1533-2993 (Online) Journal homepage: https://www.tandfonline.com/loi/wsmh20

Transparency, Hope, and Empowerment: A Model

for Partnering With Parents of a Child With Autism
Spectrum Disorder at Diagnosis and Beyond

Janice Mulligan MSW RSW , Radha MacCulloch BSW MSW , Bethany Good
MSW RSW & David B. Nicholas RSW PhD

To cite this article: Janice Mulligan MSW RSW , Radha MacCulloch BSW MSW , Bethany Good
MSW RSW & David B. Nicholas RSW PhD (2012) Transparency, Hope, and Empowerment: A
Model for Partnering With Parents of a Child With Autism Spectrum Disorder at Diagnosis and
Beyond, Social Work in Mental Health, 10:4, 311-330, DOI: 10.1080/15332985.2012.664487

To link to this article: https://doi.org/10.1080/15332985.2012.664487

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Feb 2012.
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Social Work in Mental Health, 10:311–330, 2012
Copyright © Taylor & Francis Group, LLC
ISSN: 1533-2985 print/1533-2993 online
DOI: 10.1080/15332985.2012.664487

Transparency, Hope, and Empowerment:

A Model for Partnering With Parents of a Child
With Autism Spectrum Disorder
at Diagnosis and Beyond

JANICE MULLIGAN, MSW, RSW

Department of Social Work, Hospital for Sick Children, Toronto, Ontario, Canada

RADHA MACCULLOCH, BSW, MSW

School of Social Work, McGill University, Montreal, Quebec, Canada

BETHANY GOOD, MSW, RSW

Hincks-Dellcrest Centre, Toronto, Ontario, Canada

DAVID B. NICHOLAS, RSW, PhD

Faculty of Social Work, University of Calgary, Edmonton, Alberta, Canada

While models for conveying a diagnosis of Autism Spectrum

Disorder (ASD) are beginning to emerge in the literature, rel-
atively little is known about how a diagnosis is delivered and
experienced by families. This study examined the experiences of
parents receiving a diagnosis of ASD for their child. Based on
a phenomenological approach, a purposive sample of 10 parents
(8 mothers, 2 fathers) participated in in-depth, semi-structured
interviews aimed at understanding their diagnostic experience.
Findings revealed a lengthy, complex, and discouraging assess-
ment and diagnostic process that resulted in parents feeling con-
fused, disempowered, and overwhelmed. Identified themes associ-
ated with diagnosis comprised: initial recognition that “something
is different”; waiting, worry, and uncertainty; preference for diag-
nostic information in a hopeful tenor; feeling overwhelmed with
information and emotion at diagnosis; processes of grief, relief,
and making sense of ASD; and becoming an advocate, expert,
and case manager. The importance of empowering parents by

Address correspondence to Janice Mulligan, MSW, RSW, Hospital for Sick Children,
Department of Social Work, 555 University Avenue, Toronto, Ontario, M5G1X8, Canada.
E-mail: janice.mulligan@sickkids.ca

311
312 J. Mulligan et al.

providing support, information, resources, and tools for navigating

the complexity of service/treatments at the time of diagnosis was
emphasized within a parent–professional partnership. A protocol
for practice, focused on enhanced parental empowerment, is
offered including specific clinical guidelines (what to share, how
to share, and when to share) for sharing a diagnosis of ASD.

KEYWORDS autism spectrum disorder, diagnosis, parents,

empowerment, hope

INTRODUCTION

Autism Spectrum Disorder (ASD) is a neuro-developmental condition

based on impairments in social interaction, communication, and behavior
(American Psychiatric Association, 2000). There is wide variation in symp-
toms, with 4 of 5 diagnosed children being male. The prevalence of ASD is
currently estimated at 1:110 (Centers for Disease Control and Prevention,
2009) and these rates have increased steadily over the last 15 years
(Fombonne, 2003) making ASD one of the most common developmental
disabilities.
Despite advances in ASD research, specific causes and definitive treat-
ment approaches are not yet known. Thus, the presentation of a diagnosis
of ASD is often accompanied with a great deal of uncertainty for parents
who receive numerous and sometimes conflicting messages about treatment.
Time of diagnosis can occur over the course of childhood but no matter the
time of diagnosis it has been described by parents as an emotionally intense
period marked by feelings of uncertainty, hope, and confusion.
The impact of raising a child with ASD on the family is well docu-
mented in the literature. Parents of a child with ASD often experience high
levels of stress, feelings of isolation, and stigma (Dale, Johada, & Knott, 2006;
Hutton & Caron, 2005; Woodgate, Ateah, & Secco, 2008). In fact, research
has demonstrated that caregivers of children with ASD may experience
greater psychological distress than parents of a child without ASD (Bromley,
Hare, Davison, & Emerson, 2004; Olsson & Hwang, 2001) or with another
chronic condition (Dabrowska & Pisula, 2010; Rodrigue, Morgan, & Geffken,
1990).
Various models for communicating a diagnosis to parents have been
proposed. McLaughlin’s (2005) review of the social science literature on
diagnostic processes highlights these various models for sharing a diagnosis
with parents. Some models suggest that parents should be considered “lay
diagnosticians or clinicians” (Arksey, 1994) while others identify parents as
experts in their own right who should be consulted (Avdi, Griffin, & Brough,
2000b) and, finally, others propose a relational model of sharing a diagnosis
 Transparency, Hope, and Empowerment 313

with parents that offers opportunity for meaning-making (Rigazio-DiGilio,

2000).
Receiving a diagnosis of ASD has been described as a uniquely stressful
and emotionally intense experience for families. Parents describe over-
whelming feelings of shock, relief, fear, grief, anger, isolation, guilt, and
uncertainty upon receiving a diagnosis (Boushey, 2001; Chamak, Bonniau,
Oudaya, & Ehrenberg, 2011; Dale et al., 2006; Hutton & Caron, 2005;
Whitaker, 2002). Furthermore, parents describe a general dissatisfaction with
the diagnostic process (Howlin & Moore, 1997; Siklos & Kerns, 2007). For
most, satisfaction with diagnosis is correlated with the age of the child at the
time of diagnosis, the number of consultations with professionals prior to
receiving the diagnosis, the content of shared diagnostic and ASD informa-
tion, and the way that information is conveyed (Cottrell & Summers, 1990).
In summary, the literature suggests that receiving a diagnosis of ASD is
an emotionally intense and difficult experience for parents; one potentially
influencing the family’s perception of hope and future ability to manage
this disorder. This study examined what a diagnosis of ASD for their child
means for parents, both at the time of diagnosis and beyond and raised
the important issue of parent empowerment and support during the diag-
nostic process. Specific research questions addressed the experiences and
processes incurred by parents at this critical juncture. By focusing on and
examining this key juncture in the trajectory of ASD care, it is hoped that
understanding will be generated, with implications for practice among clini-
cians and diagnosticians, cumulatively contributing to optimal assistance and
support for families.

METHODS

Drawing on a qualitative design, this study sought to describe the expe-

riences of parents receiving a diagnosis of ASD for their child using a
phenomenological approach. A phenomenological approach was selected
for its methodologic ability to examine, in an in-depth manner, the essen-
tial qualities and deeper meanings of experience, along with associated
emotions and attributions (Seidman, 2006; van Manen, 1997). Examining
this experience was thought to potentially offer a deeper understanding of
parental and family need with the aim of improving diagnostic processes
and ultimately outcomes for parents and families.
A qualitative interview approach was utilized as open-ended interviews
provide opportunity for in-depth description, exploration, and explanation
of parents’ experience. Accordingly, parents of children diagnosed with
ASD engaged in semi-structured interviews. They were invited to reflect
on and describe their experience of receiving the diagnosis and explore
the meanings associated with diagnosis, related events, and processes.
Purposive sampling was conducted, seeking sample diversity across age
314 J. Mulligan et al.

and gender of the child with ASD, parental role (mother, father), cultural
background, socioeconomic status, and family constellation (e.g., intact,
divorced, single parent). Efforts were made to recruit both mothers and
fathers. Recruitment continued until saturation was reached and no new
relevant data emerged in data collection (Strauss & Corbin, 1990).
In-depth interviews were conducted by a trained researcher, experi-
enced in qualitative, phenomenological interviewing. In keeping with an
often lengthy, focused interview associated with phenomenology, these
interviews ranged from approximately 1.5 hours to 3 hours in length,
reflecting rich participant narratives, in-depth exploration of experiences
and recollection of events, and the interpretation and construction of mean-
ing. Interviews were guided by a semi-structured interview guide, although
in keeping with a phenomenological approach, the interviewer attended
to, and was guided by, the interviewee; hence, interview questions were
adapted according to the specific presentation of each interviewee.
Interviews were audio-recorded, transcribed verbatim, and subjected
to content analysis, assisted by NVivo qualitative management and analysis
software (Richards, 1999). Transcribed interviews were subjected to open
coding, through which significant statements, thoughts, ideas, and meaning
contained within the data were illuminated (Strauss & Corbin, 1990). vanMa-
nen’s phenomenological approach to analysis was applied in open coding
by forming statements (codes) that captured the essence of a parent’s experi-
ences paragraph-by-paragraph (van Manen, 1997). Where possible, “in vivo”
codes were used by extracting words or phrases spoken by participants.
Linking codes together and making statements of relationship among codes
led to the formulation of clusters of themes that provided insight into the
essential elements of parents’ perceptions (Moustakas, 1994). Ultimately, key
concepts, categories, and emerging themes were deduced from participants’
comments.
All coding decisions were documented through “memoing” (Padgett,
1998). Memos clearly revealed the researchers’ ideas and beliefs about what
was emerging within the data. This step aimed to ensure that researcher bias
and existing ideas were noted separately and bracketed during the interview
and analysis process. Interviewer field notes were also recorded for addi-
tional information. Following review of a sample of data, the co-investigation
team developed a coding framework for analysis and any differences in
coding were resolved through a consensus process.
Trustworthiness was sought as a means to ensure scrutiny of, and
confidence in, the data and the researchers’ interpretation. The following
methods for demonstrating trustworthiness were implemented. Prolonged
engagement was implemented through extensive time spent with partici-
pants in building trust and rapport, and extensive data was collected in
lengthy interviews (Erlandson, Harris, Skipper, & Allen, 1993). Moreover,
prolonged engagement is demonstrated through this team’s extended work
 Transparency, Hope, and Empowerment 315

with children with ASD and their families over many years. Peer debrief-
ing was achieved by presenting findings to clinicians who could explore
the viability, relevance, and applicability of the findings as well as alternate
explanations (Erlandson et al., 1993). Member checking, a process of inviting
participants to comment on the accuracy of the research findings, was con-
ducted. Parents confirmed that findings reflected their ideas, experiences,
and beliefs. Thick description and referential adequacy were demonstrated
to the extent that themes are richly described and supported by text quotes
from transcripts (Erlandson et al., 1993).
Prior to study commencement, institutional research ethics board
approval was obtained. Parents were informed that their participation is vol-
untary, and that the information obtained through their participation would
be de-identified to protect their privacy.

THE SAMPLE

A sample of 10 parents (8 mothers, 2 fathers) was interviewed; all of whom

resided in Greater Toronto, Canada. All of the parents received a diagnosis
of ASD through the Hospital for Sick Children, Child Development Centre
and were invited to participate in the study by center staff who followed
participation and exclusion criteria. The mean age of parent participants
was 42 years. Parents ranged in education level (three parents had attained
a high school education, four attained some post-secondary education, and
three parents had attended advanced graduate studies). Both fathers were
employed, whereas only half of the participating mothers (4/8) worked out-
side the home. Families ranged in cultural background (Caribbean, African,
French Canadian, European, South American), and all parents spoke English,
although two families also spoke their native language in the home.
All families had one child diagnosed with ASD except for two fami-
lies that had two children with ASD. The mean age of participants’ children
with ASD was 4.8 years and all children with ASD were boys. Mean age
at diagnosis was 4 years and all parents’ children had been diagnosed 3 to
24 months prior to recruitment with a mean of 17 months. Services and
supports received by families included emotional support from extended
family and friends, provincial financial assistance, child welfare services,
physiotherapy, occupational therapy, respite, intensive behavioral interven-
tion, speech language support, play therapy, and one-on-one in-school
educational support.

RESULTS

Parents shared rich and detailed narratives about their child’s diagnosis
of ASD. They described a lengthy and complex process of receiving the
316 J. Mulligan et al.

diagnosis of ASD. Identified themes associated with receiving this diag-

nosis comprised: (i) something is different, but what?, (ii) waiting, worry
and uncertainty, (iii) receiving difficult information in a hopeful man-
ner, (iv) feeling overwhelmed with information and emotion, (v) grief,
relief and making sense of ASD, and (vi) becoming an advocate, expert
and case manager. Parents’ reported experiences revealed the diagnos-
tic process to be disempowering, often leaving parents’ feeling confused,
frustrated, and overwhelmed. These emergent themes are discussed across
time and relate to parents’ experiences before a diagnosis, at the assess-
ment and disclosure meeting, and following the diagnosis. Below are
detailed accounts of these themes, with description and corroborating text
quotes.

Before a Diagnosis: Something is Different, but What?

Formal diagnosis was not the first step on the journey of parenting a child
with ASD. Most parents described a lengthy process of personal and profes-
sional inquiry prior to receiving a formal diagnosis. For many, their initial
suspicions were triggered long before the actual diagnosis by delayed devel-
opmental milestones or differences in behavior, language development,
and/or social interaction. In some cases, parental concerns were raised in
discussion with others who had noticed unusual behavior. The recognition
of a “difference” in their child acted as a catalyst for parents, prompting them
to seek external help. As one parent explained, “I think the turning point
was acknowledging that there is something wrong, that he’s not functioning
normally.” Another parent explained,

I was constantly seeking professionals, looking for help and understand-

ing. . . . I wanted to understand how to deal with him and to help him be
the best that he could be. I was very anxious to have some understanding
of who he was and what made him tick.

For some parents, the differences in their child’s behavior caused them to
suspect a diagnosis of ASD and led them to dedicate considerable time to
learning about ASD including reading, conducting online searches, and con-
sulting with friends and family. Although some parents reported that family,
friends, and health care providers raised concerns about their child, others
reported that many in these same groups dismissed their initial suspicions,
often in an attempt to be supportive and decrease parental worry. This left
parents feeling confused and emotionally overwhelmed, as exemplified by
one mother’s comment: “My sister in-laws, my neighbors, [and] everybody
that had access to my house, they would see my children and I would point
out, ‘ [my son] doesn’t look when we call him.’ And they would say, ‘ah,
he’s busy playing, don’t worry.’”
 Transparency, Hope, and Empowerment 317

Pursuing a Diagnosis: Waiting, Worrying, and Uncertainty

In response to increasing concern for their child’s well-being and lack of
clarity regarding how to help their child, parents sought a formal assess-
ment and diagnosis. However, once a developmental assessment had been
scheduled, families continued to face a considerable delay in meeting with
the assessment team and ultimately receiving a diagnosis. “We’d been on
waiting lists forever . . .to get a diagnosis, which is I think one of the biggest
problems.” Parents described this time of waiting as intensely difficult as they
were overwhelmed with worry and concern for their child, yet felt stalled
in waiting for the formal assessment. In many cases, ASD was suspected,
but families felt ill-equipped to move forward without professional guidance
and a formal diagnosis of ASD to access resources and services. As one par-
ent explained, “It was hard, because you don’t know what you’re dealing
with. You don’t know what to give them or what kind of treatment to get
for them.” Another parent explained, “I was desperate . . . I wanted to be
useful because of what I had read about ASD, and what I had got out of the
internet and . . . books. But meanwhile I was waiting for this interview with
[the assessment team].”

The Assessment and Disclosure Meeting: Receiving Difficult

Information in a Hopeful Manner
Parents described the assessment and diagnosis experience generally to be
positive, yet they highlighted some important areas for improvement. Within
the greater Toronto region where this study was completed, a consistent
assessment and diagnosis process does not exist. Children may be seen by
an interdisciplinary team of professionals for a multi-day assessment or by
a developmental pediatrician or psychologist for a single assessment visit.
The families who took part in this study were all assessed at a local Child
Development Centre. Parents reported team members to be “sympathetic,”
“compassionate,” “sensitive,” “polite,” and “professional.” Another parent
reflected on the health care team’s hopeful and strengths-based approach:

The team did not dwell on any negatives at all. . . . That made us feel
good. They said that there’s something wrong with your kid, but he really
has all these great things. And they stressed that he has positive signs or
positive things that are great and that will help you. These positives give
you hope.

Parents stressed the importance of honest, yet hopeful messaging when

delivering a diagnosis of ASD. One parent explained,

Nobody wants to feel like they’ve just been given the death sentence for
their child . . . or that the future’s really grim. . . . I want whomever to
318 J. Mulligan et al.

be realistic . . . and acknowledge that you’ve got a tough row to hoe,

. . . but at the same time you desperately want to feel like there’s hope,
. . . that there’s room for improvement and that there’s stuff that can be
done . . . it’s not a hopeless case.

Only one parent found the overall experience to be negative, which ulti-
mately left the family displeased and distrustful of the final diagnosis. This
parent explained,

I had no idea he was being assessed to see if he was on some sort of

autistic spectrum . . . it was a five hour assessment. . . . No one had the
courage to tell me they thought he was autistic or they thought I knew,
I don’t know. . . . I thought [the] delivery sucked. . . . I think ultimately
the whole thing was quite destructive . . .

This parent generally felt that the team could have delivered diagnostic infor-
mation more effectively; however, her specific concern appeared to reflect
a lack of perceived transparency on the part of the team in clearly convey-
ing the purpose and potential outcome of the assessment process. While
a mutual understanding about the diagnostic process may have been pre-
sumed by the team, “checking in” with the family by the team may have
ensured greater parental understanding, engagement, and satisfaction.

Overwhelmed by Information and Emotion

Parents appreciated the setting in which the disclosure meeting took place,
as illustrated by one parent’s comment:

In our case it was a small setting, there was just the developmental
paediatrician and social worker who we already knew. . . . So that made
it less formal than it might have been. . . . It certainly didn’t feel like a
bunch of doctors ganging up on parents.

The assessment process was described as lengthy and intense with the
Autism Diagnostic Interview–Revised (ADI–R) taking approximately three
hours to complete. Although parents ultimately received a formal diagnosis,
they described leaving the office feeling physically exhausted, emotionally
drained, and overloaded with information. Parents stated that the greater
part of the assessment was spent completing the ADI–R without opportu-
nity for parents to direct their questions to the team. A parent expressed
frustration over this arduous and largely one-sided process:

Most of that three hour appointment was focusing on us . . . answering

questions, and then the last little segment of it, by the time you’re really
tired and your brain is mush . . . is when we were told that this was
actually the diagnosis. I don’t feel like we were given a whole lot of time
 Transparency, Hope, and Empowerment 319

at the end of it to really delve in and say, “here’s the diagnosis, this is
what it really means.”

The length of time and intensity of the assessment, coupled with the presen-
tation of difficult diagnostic information, left parents feeling unable to fully
absorb and assimilate the information provided. A parent stated, “regardless
of whether you suspect [ASD] or not . . . I think there’s a certain grieving
period.” Accordingly, parents recommended the opportunity for one or two
follow-up meetings with the assessment team after diagnosis. Such follow-
up would provide parents with more time to substantively and emotionally
grapple with diagnostic information and possible treatments, and to raise
questions and concerns as illustrated below:

You need time to think about it [the diagnosis of ASD]. If somebody were
to follow up in a couple of weeks . . . and if the parents knew that was
going to happen . . . that someone will call you to answer questions [that
would be helpful]. . . . I think people . . . need to really take it in and it
takes a little while.

Going Home With a Diagnosis: Grief, Relief, and Making

Sense of ASD
Parents reported a range of feelings related to their child’s diagnosis of
ASD, ranging from grief and shock to relief, validation, and empowerment.
Interestingly, the majority of parents described feeling a sense of relief upon
receiving a diagnosis. They described a certain level of readiness to receive
the diagnosis based on their own research and lived experiences. Despite
their level of readiness parents clearly described a sense of loss accompanied
by an awareness of the enormity of the diagnosis, which required time to
process. As one parent stated, “You want to have a chance to settle into the
diagnosis, make some observations, kind of live with it.”
Some parents described feelings of validation and vindication upon
receiving the diagnosis as they now understood that their child’s behav-
ior was related to the characteristics of ASD rather than their parenting style.
As an example, a parent commented on how the diagnosis was affirm-
ing, “Having a diagnosis . . . well, it’s just very validating because it just
makes you think, ‘Okay, I’m not crazy. There really is something going on
here.’”
Another parent explained,

[The doctor] said, “I thought he had Asperger’s the first time I laid eyes
on him” . . . I just thought, “thank you, thank you” because by this point
I’d done enough reading that I felt like, “yes . . . this is what’s going on
with him. . . . This explains his behaviours.”
320 J. Mulligan et al.

Prior to diagnosis, many parents had described intense feelings of uncer-

tainty, frustration and isolation that were exacerbated by ambiguous and
conflicting messages from health care service providers, friends and fam-
ily, and long wait lists for assessments and formal diagnosis. Unconfirmed
parental suspicions prior to diagnosis were described by many parents as
metaphorically akin to being on the edge of an “abyss,” “cliff,” “precipice”
or being set adrift in an “open sea.” The diagnosis alternatively offered an
“antidote to uncertainty” (Avdi, Griffin, & Brough, 2000a) and was described
by some parents as a “parachute” or “anchor.” As one parent explained, “We
have an anchor . . . we know what it [ASD] is, now we can start learning
about it, now we can start doing something about it.” Upon receiving a diag-
nosis, parents felt they could begin to come to terms with the diagnosis on
an emotional level, while also beginning to map out next steps for treatment.

Once you know what the issue is, then you know how to start to cope
with it. . . . I mean, it’s still not without its’ difficulties, but I think,
compared to the way I felt when I didn’t know what was going on, it’s
hugely different.

It brings you back to being the parent and having some control and
some help over issues for your child.

Living with ASD: Becoming an Advocate, Expert, and Case Manager

Parents described the uniqueness of the ASD diagnosis from other more
fixed diagnoses in that, by virtue of the word spectrum, parents emphasized
the possibility for movement along the continuum of ASD-related symp-
toms. Receiving the diagnosis was considered by parents to be a gateway to
obtaining services for their child with the aim of lessening their symptoms.
As one parent explained, “This label has enabled us to have all of the help
for him. I’m grateful that he has this label that has enabled him to have . . . a
[support person] in the classroom.” The possibility of movement, from their
child’s original “place” on the spectrum, offered a sense of hope for parents.
This hope fuelled parents’ energies toward accessing resources to improve
symptoms and move their child “off the spectrum.” One parent explained,

depending on how much help you get to your child, how much assis-
tance that child gets throughout . . . development, and how much that
child is able to learn . . . that’s going to make it easier or harder. . . .
That’s where the hope comes from. If I get my son . . . all the help that
is available to help him to understand, learn, grow and develop, then I
will get closer to [a] normal child . . .

However, parents’ sense of hope and certainty was fleeting, as they dis-
covered that the necessary resources and services were often not easily
 Transparency, Hope, and Empowerment 321

identified or accessible, if available at all. Diagnosis was viewed as a require-

ment for services, yet parents described a rapid realization that even with
a diagnosis, services were often limited and difficult to obtain, with poor
follow-up and a lack of centralized coordination. For many, this re-ignited
feelings of uncertainty and hopelessness. As one parent expressed,

it felt like you’re being taken to the edge of cliff. You’ve been given the
diagnosis, you got shoved off the end and then it was, “oh, by the way,
we haven’t got the parachute. You’ll need to get that for yourself.” You
feel like you finally got there and you’re quite happy, you’re ready to
fly, but then all of the sudden, you don’t have the rest of the equipment
you need to fly with.

Parents discussed how the lack of needed services, “strip you of the hope.”
One parent explained,

I mean you do leave here [the assessment and disclosure meeting] think-
ing that there’s so much there, it’s going to be okay; IBI [Intensive
Behavioural Intervention] has been proven to be a fantastic thing and
we’re going to see improvements and all the rest of it. I guess some
parents are lucky depending on what region they live in. . . . We can’t
get anywhere near it.

Parents expressed disappointment, frustration, and confusion with the avail-

able resources and restrictions as they were confronted with long wait lists,
rigid admission criteria, and limited resources, amid little professional guid-
ance and continuity across service providers. In reference to a disappointing
conversation with a support professional, a parent described the lack of
coordination and accessibility of resources:

She gave us a presentation saying, “These are all his issues, this is what
he really needs.” So we said, “Okay, so now where do we go?” And it’s
like, “Oh, well we don’t do anything now. That’s it. You have to now go
out there and find yourself a speech and language pathologist. You have
to get occupational therapy. You have to do physiotherapy and it’s not
there, and there’s not that link for you.”

Beyond limited resources with long wait lists, seeking treatment was compli-
cated by narrow windows of opportunity for intervention based on funding
and age restrictions. One parent expressed her frustration, stating,

What are you supposed to do? Call these places when you’re pregnant
and say, “Listen I’m expecting. Just in case, can I please get on a wait
list?” . . . because by the time the child is diagnosed he is too old . . . [to
access publicly funded resources].
322 J. Mulligan et al.

Upon facing confusing and uncoordinated services, parents felt pressure to

quickly become both an advocate and expert in the field of ASD in order
to obtain services for their child. One father stated, “the diagnosis really is
nothing. It’s all the work after.” They became de facto case managers and
coordinators, skilled in completing multiple, complex application processes
and navigating narrow criteria for treatment (i.e., early intervention). Parents
adopted the role of advocate, expert, and case manager, in order to provide
the care and support needed by their child. However, while parents perse-
vered they were often exhausted, discouraged, and frustrated. In managing
their child’s care after diagnosis, parents grappled with identifying best prac-
tices and securing resources. They described struggling to gain some control
and understanding of their child’s care and treatment; all within a confusing
array of information about interventions and a convoluted service delivery
system.
In summary, the experience of receiving a diagnosis of ASD and its
aftermath was described as difficult and discouraging. Parents’ experiences
revealed what was viewed as an alarming and “disempowering” journey
from diagnosis to treatment, often leaving parents’ feeling confused, frus-
trated, and overwhelmed. Assessment and service provider team support as
well as the adequacy of resources were seen as important means for poten-
tially easing the disempowering elements of ASD. Accordingly, providing
support, information, and resources to parents as well as tools for navigat-
ing the challenges and complexities of varying treatments were reportedly
needed in managing a diagnosis of ASD and moving forward.

DISCUSSION

Many of the findings of this study are supported by emerging research

that explores parent’s experiences of receiving a diagnosis of ASD for their
child. Existing research supports our finding that parents often encounter
conflicting opinions from others when first concerns about their child’s
development are raised and experience lengthy wait times for assessment
and diagnosis (Chamak et al., 2011; Keenan, Dillenburger, Doherty, &
Gallagher, 2010). Hackett, Shaikh, and Theodosiou (2009) found that par-
ents felt that the assessment process and disclosure of diagnosis was done
in a respectful and professional manner however follow-up was desired.
Chamak and colleagues (2011) similarly found that receipt of the diagno-
sis was met with mixed feelings of relief and anger and sadness. While
some of these study findings are well-documented in the literature, this
study offers the novel perspective of how parents interact and respond
to the diagnosis, identifying diagnosis as a process that is negotiated by
parents well beyond the actual assessment and delivery of the formal
diagnosis.
 Transparency, Hope, and Empowerment 323

Parents strongly recommended the delivery of the diagnosis of

ASD within a framework of inclusiveness, dialogue, hope, transparency,
engagement, and partnership between parents and professionals. These
elements are reminiscent of a model of empowerment in the delivery of
assessment, diagnosis, and intervention to children, parents, and families.
The concept of empowerment has been generally described as a process of
gaining personal power and control. Within the health care setting, parental
empowerment may be marked by the attainment of knowledge and skills,
active participation, awareness of choices, feelings of self-efficacy, respect,
hope, and involvement in decision making (Shulman, 1992). Of this notion
of empowerment, Shulman describes a process of, “engaging the client
(individual, family, group, or community) in developing strengths to per-
sonally and politically cope more effectively with those systems that are
important to them” (Shulman, 1992, p. 18). A focus on transparency-sharing
information in an honest, clear, and easy to understand manner is partic-
ularly important when disclosing a diagnosis of ASD. Given the complex
nature of treatment options and limited resources that families face fol-
lowing diagnosis, providing appropriate and accurate information about
such complexities and potential barriers prepares them for an often diffi-
cult job ahead. Being transparent about the limited resources and support is
important yet such honest information is also worrisome to families, espe-
cially in the initial diagnosis stage. Adopting a hopeful tone that focuses
on individual child and family strengths is important in tempering difficult
information.
At pre-diagnosis, parents described feeling powerless; an experience
marked by uncertainty regarding their child’s behavior and development,
misconceptions about ASD, and unease over lengthy assessment wait times.
These feelings were briefly alleviated at diagnosis as parents felt their ques-
tions had been answered and believed that the diagnosis would facilitate
access to resources necessary for their child’s development. The assessment
process was both validating and hopeful as it encouraged parents to move
forward and consider the next steps of intervention based on an ASD diag-
nosis. As the lack of available resources became apparent and parents were
unclear about which treatment choices to make, they once again felt pow-
erless in being able to provide the necessary care for their child. This broad
range of emotions initially seemed to immobilize parents but over time they
realized the necessity of becoming advocates, case managers, and experts in
ASD in order to meet the needs of their child in the face of an uncoordinated
and confusing system. Assuming these new responsibilities was described as
burdensome yielding little hope for parents as they encountered numerous
barriers to service.
To begin to redress these challenges, it is important to establish a con-
structive assessment-based family/clinician relationship that is grounded in
family centered elements such as hope, transparency, and partnership. This
324 J. Mulligan et al.

invites relational authenticity, collaboration, and compassion throughout the

assessment and diagnostic process, and beyond.

A Protocol for Practice

Diagnosis clearly emerges as a significant event in the trajectory of ASD for
families. The behaviorally based diagnostic criteria of ASD and unknown
etiology coupled with the invisibility and spectrum-based nature of ASD all
contribute to a diagnosis that is uniquely uncertain compared to many other
chronic health conditions or developmental disabilities. Furthermore, the
variability, uncertainty, and pervasiveness of an ASD diagnosis across devel-
opmental domains appear to contribute to uncoordinated and insufficient
systems of care and a lack of evidence-based treatments.
Findings from this study identify both strengths and limitations of the
current diagnostic process and thus invite re-consideration of the essential
components for a satisfactory disclosure of a diagnosis. Specifically, findings
suggest that the disclosure of a diagnosis of ASD should involve much more
than merely the identification and sharing of the diagnosis with the child and
their family. Findings support an integrated diagnostic protocol that aims to
enhance parent empowerment and stabilize parents’ feelings of efficacy,
power, and hope over time (Figure 1). Based on parents’ experiences, the
following clinical guidelines for sharing a diagnosis of ASD include: (1) what
to share; (2) how to share; and (3) when to share (outlined below).

WHAT TO SHARE

Information shared at diagnosis should be comprehensive in scope situat-

ing ASD within both biomedical and sociopolitical spheres. In addition to
information about the diagnosis and prognosis of ASD, the disclosure should
be accompanied by: (i) accurate information regarding the resource system
for individuals with ASD and strategies for coping with system shortfalls
including tools and support to increase parental effectiveness for accessing
resources, (ii) immediate and practical next steps for parents to take follow-
ing receipt of the diagnosis, and (iii) demonstrated support for the integral
role of the parent and family in caring for the child with ASD. Findings
clearly revealed that the breadth of this information is not currently shared
with parents. Withholding or glossing over this needed range of informa-
tion may reflect clinician time constraints or a wish to protect parents from
potentially discouraging information. Regardless of the reason, this approach
fails to acknowledge parents’ existing strengths and knowledge about their
child, and may overlook an opportunity to orient parents toward effective
means of navigating the complex array of resources.
Given that the majority of parents spoke positively about the
professional-parent relationship at diagnosis, this may be an ideal
 Transparency, Hope, and Empowerment 325

FIGURE 1 A protocol for practice.

environment to address how to manage the often complex and uncoordi-

nated system of care and what parents can provide for their child while on
wait lists for services. It may be that this initial process offers opportunity
to potentially transform what may seem to parents as an overwhelming and
uncertain reality into a more manageable set of possibilities with achiev-
able expectations based on current resources. Accordingly, it seems critical
that parents are given accurate information about resources and strategies
to navigate the system as well as the support to move forward in a timely
manner. While proposing these guidelines supporting parents in their nav-
igation of resources, it is important not to minimize the critical importance
of (i) adequately funded and accessible resources to children with ASD and
326 J. Mulligan et al.

(ii) professional case management and coordination supporting families in

resource acquisition and care monitoring. Continuing to work for system-
wide sufficiency and seamlessness of care, while also supporting parents
in navigating within current systems of service delivery are critical priorities
worthy of vigilant pursuit.

HOW TO SHARE THE DIAGNOSIS

Discussing initial diagnostic issues in the spirit of collaboration, trans-

parency, strength, and hope emerge as important components for a
comprehensive, engaging assessment and diagnosis process. The tone,
approach, and method of delivery through which support and information
are shared were conveyed to be extremely important.
First, information must be presented in an honest yet hopeful tone,
inviting open, frank, and collaborative discussions about ASD. Sharing infor-
mation with a focus on the existing strengths and capabilities of the child
and parent bolsters feelings of self-efficacy, respect, and hope. Second,
the diagnostic process creates an opportunity to prepare parents for the
road ahead by creating an environment within the diagnostic meeting that
welcomes mutual information-sharing, authentic parent participation in dis-
cussion, open questioning, and best professional response to questions,
and active involvement in decision making, ultimately fostering a climate of
empowerment and reciprocity. Parents can and should be offered an oppor-
tunity to actively participate in decisions about their child’s care even at this
early juncture, thus setting the stage for future interactions and inclusion.
Third, information should be delivered across different mediums (verbal
presentation, books or pamphlets, online resources) to allow parents to pro-
cess information at their own pace and using their preferred method of
knowledge acquisition. For instance, the information shared at the initial
assessment meeting could be augmented by written documents to which
parents can refer after leaving the initial meeting. Succinct, comprehen-
sive, and hopeful information about ASD in an easy-to-read format has the
potential to offer parents direction in identifying and accessing regionally
specific resources giving them opportunity to access information repeatedly,
as needed. This type of resource offers tangible information for parents
as well as other caregivers and/or family members who also may need
this information. Recent research evaluating an informational resource for
parents of a newly diagnosed child with ASD demonstrated that such a
resource supports family adaptation and mobilization at the time of diagnosis
(Mulligan, Steel, MacCulloch, & Nicholas, 2010).

WHEN TO SHARE THE DIAGNOSIS

Findings suggest that the disclosure of a diagnosis of ASD should be

offered as a dynamic, ongoing discussion rather than an isolated “event”
 Transparency, Hope, and Empowerment 327

occurring at a single point in time. Scheduled follow-up meetings with the

parents and assessment team were recommended to occur both immedi-
ately following diagnosis and over the course of the child’s development.
This was thought to allow parents the opportunity to integrate the infor-
mation received on a practical and emotional level, and to formulate
ongoing questions and case planning strategies based on the child’s chang-
ing needs. Allowing adequate time for parents to ask questions results
in potentially greater parent and family knowledge about ASD, which
also supports parents as active participants in the mutual development
of strategies fostering the well-being of the child with ASD and their
family.
These findings and the literature on a participatory approach in convey-
ing diagnostic information posits a process of “negotiation” between parents
and professionals such that parents bring expertise in the daily care of their
child while professionals bring field-related knowledge and theory (Abrams
& Goodman, 1998; Avdi et al., 2000a) This model of parent/professional
partnership intersects mutually respected, specialized areas of knowledge,
wisdom, and experience to optimally understand and address the needs of
the child with ASD. This approach supports research that demonstrates that
engaging parents of a child with ASD through parent training programs and
participation in their child’s treatment, fosters positive outcomes for both the
parent and child (Brookman-Frazee, 2004; Dillenburger, Keenan, Gallagher,
& McElhinney, 2002). Specifically, parents who were involved in their
child’s treatment described feelings of encouragement and empowerment,
citing increased feelings of control and hope for the future (Dillenburger
et al., 2002).

Limitations
This study has several potential limitations. Although sample diversity was
sought, the majority of parent respondents were mothers. The sample may
simply reflect the increased availability of mothers to participate in research
as most were full-time caregivers. Another issue related to sample diversity
was the fact that all children with ASD were male. This may be related
to the fact that a greater number of boys are diagnosed with ASD com-
pared to girls. The experiences of parent respondents are limited to that of
parents of boys and those living within one geographic region in Canada.
As an example of the potential benefit of variation in future study, the
experiences of parents of children diagnosed with ASD in other regions
(provincially and worldwide) may differ as a result of different diagnostic
approaches and available services and resources. However, certain issues
such as the lack of evidence-based research and confusion around best
practices remain, and are likely experienced by many parents of children
with ASD.
328 J. Mulligan et al.

CONCLUSION

The experiences of the parents interviewed in this study revealed both

strengths and limitations of the current diagnostic process. Enhancing the
diagnostic experience through re-envisioning what, how, and when to share
information related to the diagnosis has important implications for par-
ent experience and empowerment. Sharing comprehensive, honest, and
hopeful information in a collaborative manner and on an ongoing basis
is expected to enhance parents’ attainment of further knowledge and skills,
active participation, awareness of choices, feelings of self-efficacy, respect,
hope, and involvement in decision making. Furthermore, sharing a diagno-
sis from such an empowerment approach shifts traditional help-giving from
an expert model to a parent–professional partnership model (Brookman-
Frazee, 2004), lessening the knowledge/power differential between parent
and professional. Re-envisioning the sharing of a diagnosis of ASD in this
way calls upon health care providers to view individuals with a disability and
their families as partners in care who have both rights, needs, and choices
(Rappaport, 1981). It calls for health care providers to be neither prescriptive
nor conversely non-interventionist, but instead to collaborate with parents
and to work side-by-side toward enhancing “the possibilities for people to
control their own lives” (Rappaport, 1981, p. 15).
Supporting parents through such a comprehensive and ongoing discus-
sion relating to their child’s diagnosis of ASD may not change many of the
complexities and challenges in existing models of care and treatment deliv-
ery. Indeed, ongoing efforts to reform the availability of services for persons
with ASD must continue. Yet such a family centered process, as advocated
in this article, may well serve to enhance parent and family empowerment,
equipping parents in moving forward with ASD.

REFERENCES

Abrams, E.Z., & Goodman, J.F. (1998). Diagnosing developmental problems in

children: Parents and professionals negotiate bad news. Journal of Pediatric
Psychology, 23(2), 87–89.
American Psychiatric Association [DSM-IV-TR]. (2000). Diagnostic and statistical
manual of mental disorders (Revised 4th edition). Washington, DC: Author.
Arksey, H. (1994). Expert and lay participation in the construction of medical
knowledge. Sociology of Health & Illness, 16, 448–468.
Avdi, E., Griffin, C., & Brough, S. (2000a). Parents’ construction of the “problem”
during assessment and diagnosis of their child for an autistic spectrum disorder.
Journal of Health Psychology, 5(2), 241–254.
Avdi, E., Griffin, C., & Brough, S. (2000b). Parents’ constructions of professional
knowledge, expertise and authority during assessment and diagnosis of their
 Transparency, Hope, and Empowerment 329

child for an autistic spectrum disorder. British Journal of Medical Psychology,

73, 327–338.
Boushey, A. (2001). The grief cycle—One parent’s trip around. Focus on Autism &
Other Developmental Disabilities, 16(1), 27–30.
Bromley, J., Hare, D.J., Davison, K., & Emerson, E. (2004). Mothers supporting
children with autistic spectrum disorder. Autism, 8(4), 409–423.
Brookman-Frazee, L. (2004). Using parent/clinician partnerships in parent education
programs for children with Autism. Journal of Positive Behavior Interventions,
6(4), 195–213.
Centers for Disease Control and Prevention. (2009). Community Report from the
Autism and Developmental Disabilities Monitoring (ADDM) Network. Retrieved
from http://www.cdc.gov/ncbddd/autism/data.html
Chamak, B., Bonniau, B., Oudaya, L., & Ehrenberg, A. (2011). The autism diagnostic
experiences of French parents. Autism, 15(1), 83–97.
Cottrell, D.J., & Summers, K. (1990). Communicating an evolutionary diagnosis of
disability to parents. Child: Care, Health & Development, 16(4), 211–218.
Dabrowska, A., & Pisula, E. (2010). Parenting stress and coping styles in mothers
and fathers of pre-school children with Autism and Down Syndrome. Journal
of Intellectial Disability Research, 54(3), 266–280.
Dale, E., Johada, A., & Knott, F. (2006). Mothers’ attributions following their child’s
diagnosis of autistic spectrum disorder. Autism, 10(5), 463–479.
Dillenburger, K., Keenan, M., Gallagher, S., & McElhinney, M. (2002). Autism:
Intervention and parental empowerment. Child Care in Practice, 8(3), 216–219.
Erlandson, D.E., Harris, B., Skipper, L., & Allen, D.S. (1993). Doing naturalistic
inquiry. Newbury Park, CA: Sage.
Fombonne, E. (2003). Epidemiological surveys of Autism and other pervasive
developmental disorders: An update. Journal of Autism and Developmental
Disorders, 33(4), 365–382.
Hackett, L., Shaikh, S., & Theodosiou, L. (2009). Parental perceptions of the assess-
ment of Autistic Spectrum Disorders in a tier three service. Child and Adolescent
Mental Health, 14(3), 127–132.
Howlin, P., & Moore, A. (1997). Diagnosis in autism: A survey of over 1200 patients
in the UK. Autism, 1(2), 135–162.
Hutton, A.M., & Caron, S.L. (2005). Experiences of families with children with Autism
in rural New England. Focus on Autism & Other Developmental Disabilities,
20(3), 180–189.
Keenan, M., Dillenburger, K., Doherty, A., & Gallagher, S. (2010). The experiences
of parents during diagnosis and forward planning for children with Autism
Spectrum Disorder. Journal of Applied Research in Intellectual Disabilities, 23,
390–397.
McLaughlin, J. (2005). Exploring diagnostic processes: Social science perspectives.
Archives of Disease in Childhood, 90, 284–297.
Moustakas, C. (1994). Phenomenological research methods. Thousand Oaks, CA:
Sage.
Mulligan, J., Steel, L., MacCulloch, R., & Nicholas, D. (2010). Evaluation of an infor-
mation resource for parents of children with Autism Spectrum Disorder. Autism,
14(2), 113–126.
330 J. Mulligan et al.

Olsson, M.B., & Hwang, C.P. (2001). Depression in mothers and fathers of children
with intellectual disability. Journal of Intellectual Disability Research, 45(6),
535–543.
Padgett, D.K. (1998). Qualitative methods in social work research. Thousand Oaks,
CA: Sage.
Rappaport, J. (1981). In praise of paradox: A social policy of empowerment over
prevention. American Journal of Community Psychology, 9(1), 1–25.
Richards, L. (1999). Data alive! The thinking behind NVivo. Qualitative Health
Research, 9(3), 412–428.
Rigazio-DiGilio, S.A. (2000). Relational diagnosis: A co-constructive-developmental
perspective on assessment and treatment. Journal of Clinical Psychology, 56,
1017–1036.
Rodrigue, J.R., Morgan, S.B., & Geffken, G.R. (1990). Families of Autistic children:
Psycho-social functioning of mothers. Journal of Clinical Child Psychiatry, 19,
371–379.
Seidman, I. (2006). Interviewing as qualitative research: A guide for researchers in
education and the social sciences (3rd ed.). New York: Teachers College Press.
Shulman, L. (Ed.). (1992). The skills of helping individuals, families, and groups
(3rd ed.). Itasca, Illinois Boston University, School of Social Work, F.E. Peacock
Publishers, Inc.
Siklos, S., & Kerns, K.A. (2007). Assessing the diagnostic experiences of a small
sample of parents of children with autism spectrum disorders. Research in
Developmental Disabilities, 28, 9–22.
Strauss, A.L., & Corbin, J. (1990). Basics of qualitative research: Grounded theory
procedures and techniques. Newbury Park, CA: Sage.
Van Manen, M. (1997). Researching lived experience: Human science for an action
sensitive pedagogy (2nd ed.). London, ON: The Althouse Press.
Whitaker, P. (2002). Supporting families of preschool children with autism: What
parents want and what helps. Autism, 6(4), 411–426.
Woodgate, R.L., Ateah, C., & Secco, L. (2008). Living in a world of our own:
The experience of parents who have a child with autism. Qualitative Health
Research, 18(8), 1075–1083.