874647

research-article2019
AUT0010.1177/1362361319874647AutismGentles et al.

Original Article

Autism

Coming to understand the child has autism: 1­–14

© The Author(s) 2019

A process illustrating parents’ evolving Article reuse guidelines:

readiness for engaging in care sagepub.com/journals-permissions

DOI: 10.1177/1362361319874647
https://doi.org/10.1177/1362361319874647
journals.sagepub.com/home/aut

Stephen J Gentles1 , David B Nicholas2, Susan M Jack1,

K Ann McKibbon1 and Peter Szatmari3

Abstract
We report results from a large qualitative study regarding the process of parents coming to understand the child has autism
starting from the time of initial developmental concerns. Specifically, we present findings relevant to understanding how
parents become motivated and prepared for engaging in care at this early stage. The study included primary data from 45
intensive interviews with 32 mothers and 9 expert professionals from urban and rural regions of Ontario, Canada. Grounded
theory methods were used to guide data collection and analysis. Parents’ readiness (motivation and capacity) for engagement
develops progressively at different rates as they follow individual paths of meaning making. Four optional steps account
for their varied trajectories: forming an image of difference, starting to question the signs, knowing something is wrong, and being
convinced it’s autism. Both the nature of the information and professional help parents seek, and the urgency with which they
seek them, evolve in predictable ways depending on how far they have progressed in understanding their child has autism.
Results indicate the need for sensitivity to parents’ varying awareness and readiness for involvement when engaging with
them in early care, tailoring parent support interventions, and otherwise planning family-centered care pathways.

Lay Abstract
What is already known about the topic?
Parents of children with autism often learn about their child’s autism before diagnosis and can spend long periods seeking
care (including assessment) before receiving a diagnosis. Meanwhile, parents’ readiness to engage in care at this early
stage can vary from parent to parent.
What this paper adds?
This study revealed how parents come to understand their child has autism—on their own terms, rather than from just
talking to professionals. It also explained how parents’ growing awareness of their child’s autism leads them to feel more
motivated to engage in care by seeking information and pursuing services. Four “optional steps” described how parents’
growing readiness to engage in care at this early stage can vary, depending on their personal process.
Implications for practice, research, or policy
The results suggest ways that professionals can be more sensitive (a) to parents’ varying awareness of autism and (b)
to their varying readiness for being involved in early care. They also suggest ways to tailor parent supports to their
individual situation and design care that is more family centered. Not all parents want high levels of involvement.
Depending on their personal process, some parents may need care and support that is directed at them before feeling
ready for professionals to engage them in care directed at the child.

Keywords
caregiver, family-centered care, grounded theory, patient engagement, patient-centered care, pre-diagnosis

1McMaster University, Canada Corresponding author:

2University of Calgary, Canada Stephen J Gentles, Offord Centre for Child Studies, Department of
3University of Toronto, Canada Psychiatry and Behavioural Neurosciences, McMaster University, MIP
201A, 175 Longwood Road S, Hamilton, ON L8P 0A1, Canada.
Email: [email protected]
2 Autism 00(0)

In response to the growing emphasis on family-centered intervals: the time from first noticing concerns to the first
care models, autism service providers internationally are clinical encounter and the interval from parents’ first clini-
increasingly involving parents and caregivers in the plan- cal encounter to address developmental concerns to final
ning and delivery of intervention and services. In Ontario, diagnosis, often called the diagnostic process. Several
Canada, for example, guidance for implementing the prov- studies have noted parents’ general sense of uncertainty
ince’s Autism Program encourages active family engage- and need for answers at this pre-diagnosis stage (e.g.
ment in service planning to promote individualized Carlsson, Miniscalco, Kadesjö, & Laakso, 2016; Midence
family-centered services (ASD Clinical Expert Committee, & O’Neill, 1999). Additional research indicates how, by
2017). In addition, there is a growing prominence of par- the time of diagnosis, parents (a) can feel overwhelmed by
ent-mediated intervention models that involve training and yet have varying needs for information (e.g. Osborne
caregivers to deliver naturalistic, developmental, behavio- & Reed, 2008) and (b) have different personal support
ral intervention (NDBI) at high intensity throughout the needs (e.g. Carlsson et al., 2016; Legg & Tickle, 2019).
child’s day, requiring substantial caregiver time, energy, Both illustrate the need for sensitivity to parents’ varying
and commitment (Schreibman et al., 2015)—some for readiness for engagement in care at early stages.
young children whose diagnosis is not yet confirmed Much of the literature on parents’ pre-diagnosis experi-
(Brian, Smith, Zwaigenbaum, Roberts, & Bryson, 2015). ence presents findings with reference to the clinical diag-
Such parent involvement is theoretically desirable because nostic process, which inevitably varies by jurisdiction (e.g.
it potentially increases effectiveness by capitalizing on consider differences between Sweden and the United
parents’ expert knowledge of the child and their ability to Kingdom: Carlsson et al., 2016; Crane et al., 2016). Focus
generalize behaviors and skills beyond the clinic to the on this clinical process is unlikely to fully account for the
child’s everyday life. Furthermore, by reducing intensity parent’s social psychological process, which is only partly
and cost of therapist involvement, public systems can dis- defined by clinical interactions. We have argued previ-
tribute scarce resources to benefit more parents. Within ously (Gentles, Nicholas, Jack, McKibbon, & Szatmari,
such care models, however, parents are being asked to be 2019) that parents’ actions of engaging in autism-related
involved earlier, often close to diagnosis, when emotional care, including their path to diagnosis, are best understood
(Davis & Carter, 2008; Osborne, McHugh, Saunders, & by focusing on the meanings they attribute to aspects of
Reed, 2008) and work-related (Singh, 2016) burdens are their broader personal situation or lifeworld (Barry,
known to be especially high. Insisting on high levels of Stevenson, Britten, Barber, & Bradley, 2001), which exists
engagement for all parents at this early stage may have predominantly outside clinical settings. We are unaware of
unintended consequences on a subset of those who are not prior research that provides theoretical knowledge from a
ready to meet the additional demands placed on them, lifeworld perspective of the natural process by which car-
exacerbating parenting stress, which can in turn reduce egivers initially (often pre-diagnosis) become ready and
intervention effectiveness (Osborne, McHugh, Saunders, motivated to engage in care at an individual level.
& Reed, 2007, 2008) and be a barrier to achieving optimal Here, we provide a detailed qualitative account of the
outcomes for the family and child (Prilleltensky & Nelson, process of parents coming to understand their child has
2000; Reed & Osborne, 2012). autism starting from the time of first concern, with a spe-
More specific qualitative understanding of the mecha- cific focus on aspects that explain how parents become
nisms explaining parents’ varying levels of readiness for socially and psychologically engaged in care at the earliest
engagement could facilitate incorporating greater sensitiv- stages of their journey. This is the second substantive
ity in planning or implementing family-centered care mod- report from a large qualitative study whose broader aim
els, especially for those parents just entering care systems was to explain how Ontario parents of children with autism
who have minimal prior exposure to autism. In addition, navigate autism-related intervention and care over much
such knowledge may be conceptually useful for develop- of the lifespan—spanning milestones from pre-diagnosis
ing autism-specific tools to assess parents’ psychosocial to preparing for adulthood (Gentles et al., 2019). In that
functioning and support needs, the need for which is initial report, we elaborated the overall theory with a focus
described elsewhere (Reed & Osborne, 2012; Zaidman- on engagement in care at a more general level across their
Zait, 2018). long-term navigating journey. Notably, the part of parents’
In the case of autism, parents sometimes learn about journey for which data were most densely available was
their child’s condition before diagnosis and commonly the initial phase. This report thus serves to further develop
pass through a prolonged process of seeking care that pre- that broad theory of engaging in autism-related care by
cedes it. According to a recent UK survey, for example, elaborating on what was the most developed and informa-
parents first noticed developmental concerns in 96% of tive example from the study: the mostly pre-diagnosis pro-
cases, and the interval from first concern to diagnosis aver- cess of coming to understand the child has autism. We
aged 4.6 years (Crane, Chester, Goddard, Henry, & Hill, present this example to illustrate in-depth several key
2016). This pre-diagnosis interval comprises two smaller aspects of parents’ evolving motivation and readiness for
Gentles et al. 3

engagement and promote greater clinical understanding Grounded theory methods were used to guide concur-
when involving them at this early phase of the diagnostic rent iterative data collection and analysis (Charmaz, 2006;
process. Corbin & Strauss, 2008). Theoretical sampling was used to
Importantly, while this report is intended to inform clin- inform ongoing data collection by selecting examples of
ical support for families, rather than focus on caregivers’ important categories to be developed, often by asking new
experience of the clinical pathways and interactions lead- questions in interviews (Charmaz, 2006; Corbin & Strauss,
ing to diagnosis (e.g. Boshoff, Gibbs, Phillips, Wiles, & 2008; Gentles, Charles, Ploeg, & McKibbon, 2015; Glaser,
Porter, 2018; Ho, Yi, Griffiths, Chan, & Murray, 2014), it 1978; Strauss & Corbin, 1998). Parents completed an ini-
addresses parents’ independent process of reaching per- tial phone survey to collect demographic and other pre-
sonal certainty of their child’s autism, stemming from their specified data, and all participants completed 90-minute
lifeworld interactions, clinical and otherwise. Here, we intensive qualitative interviews face-to-face or by phone,
define both engagement and care according to the person- which were audio-recorded and professionally transcribed.
centered perspective of the overall study (Gentles et al., Following a flexible interview guide, participants were
2019): engagement is a parent’s “readiness and motivation asked about experiences and actions navigating interven-
at a given point in time to be involved in [personally] navi- tion from the time parents first noticed developmental
gating intervention to address a [personally-defined] signs—including secondary reports about fathers’ experi-
health concern” (p. 6), while care is defined according to ences and actions (in the three dyad interviews, the father’s
how parents broadly defined intervention, “as any therapy, roles were discussed openly by both parents). Notably, all
service, or modification a parent or care professional con- parents provided valuable data about coming to under-
siders using to address an autism-related concern” (p. 3). stand their child had autism. Analysis featured constant
Here, concerns are defined as being from the parent’s per- comparison used in coding and category development,
spective and include any circumstance or condition attrib- analytic memo writing, conceptual diagrams, and integra-
utable to their child’s autism (e.g. signs, comorbid tive writing, all done to consistently promote analytic
conditions) that they perceive as sufficiently problematic depth and ensure findings were grounded in primary par-
to motivate taking personal action to address (p. 7). ticipant data.
We used the social theory of symbolic interactionism as
an explicit framework, structuring the analysis according
Methods to parents’ meaning making and action/interactional pro-
Ethics approval for human research (HHS/McMaster cesses (Blumer, 1969). Thus, rather than portray behavior
REB, 11457) and written consent from all participants was (which implies an observer perspective, ignorant of actors’
obtained. We conducted 45 in-depth interviews (four par- inner worlds and motivations), we instead sought to under-
ticipants completing two interviews) with 32 mothers stand and portray parents’ first-person action, including
(while only mothers were invited, fathers co-participated the meaning-making that underlies and explains it. As
in three cases) and 9 professionals with experience sup- such, parents invariably were interpreted as the experts in
porting parents. Select documents were also reviewed their unique situations, and their actions navigating inter-
including books from parent and professional perspec- vention (engaging in care) were not judged by outside
tives, books or movies mentioned by parents, and partici- standards. It is important to note here that throughout we
pant-referenced web sites; these secondary sources use the word problematic in a symbolic interactionist sense
provided educational and contextual background, and to refer to aspects of parents’ perceptions or ideas about the
typed notes taken on them were coded and used in analytic things in their situation (e.g. child behaviors, signs) that
memos. Participants were purposefully selected from motivate them to consider one or more lines of action to
diverse sources across Ontario, capturing maximally vary- bring about some kind of change; the word is never used to
ing demographic perspectives and experiences (Gentles describe any participant’s broad orientation or attitude to
et al., 2019). Professionals were purposefully selected for autism (e.g. as fundamentally negative or undesirable)—
their long-standing commitment and empathy supporting indeed, by the time of interview, most parents communi-
parents and could thus share crosscutting observations and cated an accepting understanding of autism, which they
examples from extended experience. While little profes- perceived as essential to who their child was.
sional data are cited directly here, professionals contrib- Reporting procedures that crosslink participant data
uted substantively by helping confirm and refine analytic (e.g. using pseudonyms) have been avoided in this report
interpretations that had been developed toward the end of to maintain privacy (Morse & Coulehan, 2014). Every par-
data collection (as did several parents who similarly par- ticipant provided substantive data that were used in the
ticipated in late-stage interviews). Importantly, second- analysis or writing, and the data presented here (quotes,
hand interpretations of parents’ experience and action attributable narrative descriptions) originate from a variety
needed to be transparently supported by credible examples of participants (i.e. no one participant’s data dominates).
or data for inclusion in the analysis. Quantitative descriptors (e.g. multiple, several, a majority)
4 Autism 00(0)

Figure 1.  Distribution of intervals from first concern to diagnosis (36 children of 32 parents).

have been verified with the data as referring to proportions Location within the broader theory of navigating
of participants in this sample and may not be representa- intervention
tive of the population. Member checking was achieved in
a manner consistent with grounded theory by gauging par- Previously (Gentles et al., 2019), we described four inter-
ticipants’ reactions about coherence of the analysis with related meaning-making processes that explain parents’
parent experience and where there was coherence, direct- actions of navigating and engaging in autism-related inter-
ing subsequent discussion to generate new properties of vention and care: informing the self, seeing what is
those categories (Charmaz, 2006, p. 111). A detailed involved, adapting emotionally, and defining concerns—
account of reflexivity methods and the primary research- defined in Table 1. The process of coming to understand
er’s (S.J.G.) position and identity as a non-clinician is pub- the child has autism outlined in depth in the following sec-
lished elsewhere (Gentles, Jack, Nicholas, & McKibbon, tion is a significant example of the process of defining con-
2014); briefly, self-awareness was used to prioritize par- cerns. Here, parents specifically define the overarching
ents’ perspectives and minimize effects of researchers’ developmental concern of autism itself (although parents
backgrounds on the analysis. Data management and analy- often also define other more specific concerns, pre-diagno-
sis were supported by software (NVivo 10; QSR). By pri- sis, for example, speech problems).
oritizing first-hand and person-centered perspectives, the The process of coming to understand the child has
methodological approach supported identifying relevant autism illustrates two key theoretical aspects: first, the
factors and mechanisms underlying individual-level pro- impetus or motivation for parents’ responses and action
cesses like engagement (as defined above). Further details does not necessarily develop suddenly but rather usually
about the study are freely accessible (Gentles et al., 2019). takes time to evolve over multiple steps of meaning-mak-
ing; and second, the other meaning-making processes—in
this case, informing the self and adapting emotionally—
Results are inextricably linked with the process of defining con-
cerns. Together, these processes prepare and motivate the
Parent participant characteristics
parent for the early actions to engage in care.
The 32 parent participants represented varied experiences
including diverse rural (22%) and urban (78%) regions of
Ontario, child ages (range 2.5–18 years), number of chil-
Coming to understand the child has autism
dren with autism (up to 5), ethnocultural backgrounds, and Parents follow variable paths to the initial awareness that
experience navigating intervention at the time of interview their child has autism. Most parent participants became
(range: 1–9 years; Gentles et al., 2019). Median age at aware well before the official diagnosis, which prompted
diagnosis was 36 months (range: 20–126 months), and them to take the action of pursuing a diagnostic assessment,
median age at first concern was 23  months (range: usually because diagnosis was seen as necessary to access
7–73 months). Figure 1 shows the distribution of the inter- funded services. Only a minority became aware after diag-
vals from first concern to diagnosis. nostic assessment. In either case, parents commonly passed
Gentles et al. 5

Table 1.  Four meaning-making processes relevant to parents engaging in autism-related intervention and care and manifestations
pre-diagnosis.

Process Description (Gentles, Nicholas, Jack, McKibbon, & Relevant pre-diagnosis manifestations
Szatmari, 2019)
Defining concerns Perceiving issues related to autism as problematic, and •• Coming to understand the child has autism
ultimately concerning enough to motivate them to want
to take action to address; concerns are thus the impetus
for action related to engaging in care; they can be general,
like the child’s long-term happiness, or specific, like
functional speech
Informing the self Obtaining and internalizing information through reflective •• Re how to identify autism
experience, observation, or seeking or passively receiving •• Re what to expect with autism
information from a variety of sources (professionals, social •• Re what to do first about autism
acquaintances, the child with autism, books, Internet, etc.)
to develop knowledge and understanding about a concern
or about options for addressing it.
Adapting emotionally Responding internally by successfully adapting to the •• Accepting the possibility of autism
emotionally difficult implications parents may define their •• Releasing culturally based hopes and
situation as having for themselves or their child; success expectations for the child’s future
generally prepares and motivates parents for engaging in •• Accepting an uncertain and frightening
care. future for the child
•• (See Gentles et al., 2019 for aspects
relevant at later stages)
Seeing what is involved Experiencing the work involved in, and learning about the •• Less relevant, pre-diagnosis (prior to
care systems they must interact with after, taking action experience navigating care)
themselves to navigate care.

through several steps to achieve this awareness. Here, we especially early expectations for the future. In one moth-
define a series of four possible steps that parents may gen- er’s case, attachment to the prior image of her child was
erally undergo: forming an image of difference, starting to particularly strong due to limited fertility:
question the signs, knowing something is wrong, and being
convinced it’s autism—all based on the personal meanings Well, we had really put her on a pedestal before that because .
and interpretations parents constructed themselves. . . I mean, probably even more so than other parents. I thought
Parents may skip earlier steps on their individual path I might never have a baby . . . So [learning she had autism]
was really hard. It was the first time that the perfection
to awareness, and thus, not all steps apply to all parents.
disappeared.
Moreover, the duration spent within any one step varies
according to unique personal factors and external interac-
For mothers like this, adapting emotionally (Table 1)
tions that lead to awareness. As certainty about the exist-
was difficult and prolonged. She further described having
ence of a developmental concern grew, parents generally to release her hold on dreams she had for her daughter’s
became progressively motivated to pursue more types of future such as getting married and having children, which
action, corresponding to their progressing readiness for was highly distressing: “I spent about a week or ten days
engagement. First, we address the important influences feeling like she had died. It was . . . yeah, it was really,
that parents’ prior images, or understandings, have on how really overwhelming. And I was just so sad.”
readily they pass through these steps. A second factor influencing parents’ readiness to trans-
form prior images of their child is their initial understand-
Importance of prior images of the child and of autism. Most ing and emotional attitude toward autism itself. The
parents start out naïve about the possibility that their child following mother, who had developed a more detailed ini-
is on the autism spectrum—excepting parents who have tial image of autism from her experience growing up with
encountered autism in a previous child. Coming to under- a brother with Asperger’s disorder, described her attitude
stand the child has autism therefore often begins, before after learning her son had autism in unexpectedly positive
noticing any suggestive problems, with the parent’s initial terms:
images of their child and their parental role. Parents ulti-
mately transform these prior images as they pass succes- It was joy. And I know that that’s very backward for a lot of
sive thresholds of awareness regarding their child’s autism. people. But I absolutely adore my brother [who had autism
One major influence on the speed of the process is the before my son]. I mean, he’s at [University] doing his Master’s
varying strength of parents’ attachment to prior images, right now, and was accepted to the doctorate program for
6 Autism 00(0)

engineering. But he’s decided not to do it. But he’s a very Sometimes parents formulated their own reassuring expla-
intelligent man and surpassed all kinds of barriers that service nations why their child’s behavior was not problematic.
providers and doctors had sort of said would be in place. So Often parents later regretted accepting reassuring ration-
right away my view of autism is very different than a lot of alizations, because they felt it delayed action and interven-
people’s. I’ve talked to friends who would say, “I would be
tion. Parents likewise regretted ignoring more worrisome
devastated if my child had autism.” And I’m like, “Why!?”
intuitions, or failing to critically challenge reassuring feed-
Because to me, it’s not as much of a barrier as it is to others.
So it was joy, because I absolutely delight in my brother. He’s back, as one mother reflected:
an absolutely amazing person and makes me laugh left, right,
and center. And so I thought, ‘I’m going to have one of those. So you have a tendency to trust your doctor and go, ‘OK,
I’m going to have a boy like that. This is awesome. everything’s fine.’ Because you want everything to be fine. So
you kind of push your own doubts away. If the doctor thinks
everything’s fine, surely everything must be fine and we’re
Due to her positive image of autism, this mother showed
just seeing things that aren’t there. In hindsight, I wish I had
remarkable emotional readiness to accept the possibility of listened to myself more.
autism and subsequently revised her image of her son
quickly and easily. Another factor that delayed some parents at this step
Most parents in this study, however, started out less was that they were raising their first child. Thus, they
familiar with autism. They reported having at least some lacked knowledge of developmental milestones—the nec-
initial picture informed, for example, by fuzzy memories essary reference points for forming an image of difference.
of the movie Rain Man (1988; Dustin Hoffman as Parents shared comments like, “He was my first baby, so I
Raymond Babbitt). Such incomplete images were usually had no clue about how things were supposed to go.” Some
associated with initially uncertain and negative expecta- eventually informed themselves by consulting parenting
tions for the future. Consequently, many described react- books or other sources. Others discovered the significance
ing to the discovery of autism with powerful feelings of of the signs they observed after interacting with profes-
fear and sadness. sionals or others with expert knowledge.
When parents first realized a difference was potentially
First step: forming an image of difference.  A majority of par- problematic, they generally responded by starting to ques-
ents began the process of coming to understand their child tion the signs, or occasionally by skipping ahead to know-
has autism by simply noticing what initially seemed like ing something was wrong.
minor signs in their child. Parents commonly described
responding to initial perceptions of these signs either by Second step: starting to question the signs.  A parent can start
starting to see their child as slightly different in some to question the signs when the child’s behaviors she
respect and often “thinking nothing of it.” Importantly, observes trigger an initially vague suspicion that a sign is
parents did not perceive these signs as worrisome or prob- problematic enough to warrant further investigation. This
lematic enough to represent a concern requiring action. step is thus the parent’s first interpretive formulation that
Parents thus did not take action to further investigate or something is sufficiently unusual to motivate taking action.
seek information about perceived signs at this step. Rather, This is not action to intervene, but rather to assess and
the only action taken was to observe the child. begin defining a potential problem that may be reason for
One mother reported noticing difference in her son in concern. Parents’ motivation and engagement here is
the first year of life, therefore limited to information gathering and reflection,
whose goal is defining the problem enough to know
When he was born, when we took him home, one thing that I
noticed about him right away was that he preferred to be alone
whether further action is needed and what to do next.
. . . If he was crying and he was having a difficult time settling, This commonly begins with noticing one or more signs
if you would just put him in his crib and close the door and perceived as mildly problematic. For many parents, some
walk out, that’s what would make him happy. And I always information about these signs came from other profession-
thought that was a little bit strange, because I do have nieces als, such as daycare providers, positioned to observe the
and nephews and none of them were like that. People would child for extended periods. Often, parents gradually inte-
tell me he’s just one of those babies. Some babies get grated multiple signs, from multiple settings, over a period
over-stimulated. of time that, together, suggested there was something per-
haps mildly concerning with their child. One mother
In this and other cases, mothers formed their images of recalled how she slowly moved beyond seeing her son as
difference based on comparison with other children. This just different:
mother did not interpret the signs as a reason for concern at
least partly because others told her not to worry. Other par- It wasn’t until, I guess, just after he turned a year. He hated his
ents recalled hearing reassurances like, “boys will be first birthday party, which surprised me. He screamed through
boys,” “all kids do that,” or “he’s just a late bloomer.” the whole thing. And Christmas that year was hard . . . I
Gentles et al. 7

remember we’d gone to playgroup. He wasn’t playing with or initiating conversations to develop awareness. Other
the other kids. He would sit with me, which wasn’t untypical parents were encouraged to question the signs by relatives
because there were other kids that just sat with their parents. or acquaintances with expert knowledge. This helped gen-
He wasn’t interested in toys. He wasn’t interested in venturing tly guide parents past feelings of denial, speeding aware-
away from me. One of the other moms was saying the other
ness of their child’s autism, and thus readiness to engage in
day he was eating soup on his own and I was like, “Wow!” So
care.
I just kept putting things in the back of head and thinking,
“Oh. Oh,” you know. Parents generally began proactively informing them-
selves at the point of starting to question the signs. Parents
Some parents began tracking emerging signs in written who considered autism a possibility described researching,
logs. Whether awareness developed gradually or suddenly, often to seek specific information they learned existed
parents’ perceptions eventually crossed a threshold for tak- from knowledgeable experts. Such parents almost always
ing action to pursue information more insistently. began by using Internet search engines like Google. At this
stage, parents usually focused only on information inform-
Non-specific versus autism-specific signs.  Parents approached ing whether their child had autism—being less concerned
information-seeking differently depending on whether they with information about the meaning of autism, until later.
were naïve or aware of autism as a possibility. Autism-
naïve parents sought the roots of what they perceived to be Third step: knowing something is wrong.  Eventually, parents
isolated problems unrelated to autism—such as pursuing interpret that the signs they have observed in their child
tests for possible hearing problems, or speech and language indicate a problem sufficiently concerning to warrant
assessment for perceived speech delays—prior to and inde- urgent attention and action. For example, multiple parents,
pendent of any diagnostic assessment. Such parents usually after initially seeking clinical assessments to investigate
progressed to knowing something was wrong non-specifi- perceived speech or hearing problems, ultimately per-
cally to autism, often seeking input from professionals who ceived these narrow functional problems to indicate a
subsequently helped them consider autism as an underlying broader more serious developmental impairment, causing
concern. worry and a sense of urgency to take action. We note that
Alternatively, parents who became aware and emotion- parents themselves used the word “wrong” in multiple
ally accepted the possibility of autism in this step eventu- instances to convey the more serious nature of a perceived
ally sought information about specific signs of autism. For emerging concern that they recognized had the potential to
example, several found information about established red significantly impact their child’s future. In many cases,
flags for autism, questioning whether these matched signs parents reached a point of knowing something is wrong
they observed in their child. For these parents, questioning after interacting with knowledgeable others (professionals,
signs frequently led directly to being convinced the child acquaintances, relatives), who interpreted the signs and
had autism (i.e. skipping the step knowing something is guided them to grasp the serious nature of the problem ear-
wrong). lier than they otherwise would have.
In seeking information, many parents first consulted The transition to this step can be gradual, particularly
clinicians, often a family physician. Clinicians could when parents are not ready to abandon rationalizations for
respond by affirming the problematic nature of the sign, or not being concerned about the signs they observe. One
by denying or playing down its significance. Professional mother described finally overcoming such rationalizations
affirmation, either of an unspecified problem or of autism as follows:
itself, rapidly transformed the parent’s vague suspicion
into a real concern, leading to either knowing something is Actually, I worried for a long time because I was telling
myself, ‘No, it’s going to happen next month. He’ll talk next
wrong or being convinced it is autism. Professional denial,
month. It’s gonna be next month,’ you know. I knew something
however, often delayed parents understanding their child was wrong. But then I was telling myself, ‘You know what,
had autism. At this pre-concern stage, parents were less maybe it’s a little too early. You know, kids, sometimes they
insistent their questioning and observations be taken seri- develop in different ways. So maybe he’s taking a little longer.
ously and accepted professional denial with less protest. He will talk. He will talk.’ That’s what I was telling myself.
Some parents were encouraged to start questioning the But then I said, ‘Uh-oh, that’s it. We have to do something
signs by a tactful professional, usually after questioning a now.’
sign they were unaware indicated autism. Since some
types of professionals are unqualified to diagnose autism, While knowing something is wrong generally features
many took care to avoid using the label and instead continued questioning of poorly understood signs by seek-
employed roundabout ways to raise the parent’s aware- ing information, it is also when most parents begin experi-
ness. Parents described how professionals’ prompts raised encing a pronounced sense of urgency for action to
questions in their own minds that led them to seek further intervene due to feelings of fear and anxiety about their
information, such as by investigating red flags for autism child’s wellbeing, uncertainty about the nature of the
8 Autism 00(0)

problem, and implications for the future. Thus, the goal of formative effects of a parent’s own family growing up.)
understanding the problem here is not to determine whether The main manifestation of difficulty with this aspect of
intervention is necessary, but rather to quickly understand emotionally adapting is transient grieving, due to abrupt
the problem clearly enough to know how to intervene. loss of cherished hopes for the future. One mother reflec-
Autism-naïve parents usually first identified worrisome tively distinguished the idea of giving up culturally based
but non-specific social functioning or developmental prob- hopes for the future, from the more visceral feeling par-
lems, or non-autism diagnoses such as attention-deficit/ ents recalled experiencing at the time, of actually losing
hyperactivity disorder (ADHD), as reasons for concern. one’s child entirely:
This increased motivation for informing the self usually
led to first contact with information regarding the possibil- But for [my husband and me], when we’ve talked about it
ity of autism. since, we grieved for the kids we thought we were getting.
You know, you think you’re getting your neurotypical, normal
Role of adapting emotionally.  Adapting emotionally, children that are going to run and play. You have this idea in
your head of how they’re going to grow up, and the things that
specifically the three early aspects listed in Table 1, is
you’re going to do with them. And when somebody tells you,
an essential part of coming to understand the child has “Oh, they might have autism . . .” all those things are sort of
autism, especially in this step. The first aspect that par- ripped away from you. And you have to grieve those pictures
ents can struggle with is accepting the possibility of autism in your head that you’re never going to be able to do with
(sometimes occurring earlier, in starting to question the them. Or, that’s what we thought then.
signs). Described above, prior images of the child and of
autism substantially influenced how difficult or slow this Grieving transiently delayed parents’ readiness for tak-
could be. ing early action such as seeking or accepting more certain
Denial, as identified by parents themselves, represented information about the possibility of autism or pursuing ini-
the most apparent emotional barrier to accepting the pos- tial forms of intervention. But it was invariably transient,
sibility of autism. It generally delayed readiness for action as parents adapted to realities of their new situation. Most
and ultimately slowed engagement in parent-desired care. parents, however, could modify their expectations more
Importantly, denial precluded reaching the point of know- incrementally, avoiding intense grieving.
ing something is wrong despite signs of developmental Parents who accepted the possibility of autism (but
problems. In many cases in this study, it was the father were not yet convinced it is autism) usually became
who remained resistant to accepting that something was driven to research the condition further, specifically to
wrong, sometimes even after the child was positively diag- understand its meaning and how to intervene. Numerous
nosed with autism. The denial behaviors of partners some- autism-aware parents described strong emotional reac-
times became a barrier, reducing the mother’s motivation tions to the online information they encountered at this
and capacity to take action in response to knowing some- point—usually fearful. Indeed, for many such parents,
thing is wrong. Some fathers were in such denial they
informing the self became inseparable at this point from
obstructed the mother’s pursuit of a diagnosis or interven-
another process, accepting an uncertain and frightening
tion—for example, by limiting access to financial resources
future for their child, in which parents struggle to accept
or transportation.
Knowing something is wrong is also when many par- new images and expectations to replace the ones they let
ents begin the emotional process of releasing (and recast- go of. The difficult part of this process for parents often
ing) culturally-based hopes and expectations for their involved managing the fears that some online informa-
child’s future (see Table 1, Adapting emotionally), as they tion sources caused.
start imagining the possible long-term implications of a Parents described being scared by what they felt in
serious developmental problem—commonly involving hindsight were unbalanced portrayals of autism, depicting
milestones like university, marriage, employment, or liv- only dramatic impairment and bleak outcomes (e.g. insti-
ing independently. (Illustrating how such expectations are tutionalization, no autonomy) that they did not understand
not uniform across cultures, one Northern Ontario partici- at the time might not apply to their child. These often
pant described how some Indigenous families’ initial exaggerated images made accepting an uncertain and
reactions could differ from those of non-Indigenous fami- frightening future for their child too emotionally over-
lies, with some communities traditionally holding more whelming for many parents, delaying their psychological
open attitudes, customs, and expectations regarding readiness to take action. As one mother, speaking on behalf
development and inclusion. Note, however, that “culture” of both parents, recalled, “I think both of us were probably
here is not restricted to ethnocultural groups, but can refer a little afraid of what we’d read. So we read sparingly.
to the set of ideas, attitudes, and practices shared by any We’d see [something about autism], we’d read . . . and then
social group. For example, the important cultural influ- we’d kind of back off.” Another parent shared how fear
ences include those of smaller social groups, such as the affected her attitude to researching,
Gentles et al. 9

And that was about all I could handle. I couldn’t go to any relatives—perceived to have appropriate knowledge or
other websites at that point because I was still in shock, training. Adapting emotionally to this information took
because I thought my whole life . . . or actually [our son’s] longer when the news triggered initial denial and shock.
whole life was over, at that point. I was positive—I said: Such responses were more common among the small
‘We’re going to have to institutionalize him.’
minority of parents who were still naïve about the possibil-
ity of autism upon being informed. One mother, having
The earlier aspects of adapting emotionally therefore reached the point of knowing something was wrong with
powerfully influence parents’ readiness. Not only can spe- her son, thought he had ADHD and was shocked to learn
cific difficulties cause critical delays in readiness for the signs she observed indicated autism:
action, but the same worries and fears could sometimes be
powerful motivators for action. I knew nothing about autism . . . I thought, “No, no, no.”
Because he has [ADHD], he can’t have [autism], you know.
Taking action by seeking professionals’ help.  Seeking pro- So it hit us like a . . . we hit a brick wall when we sat there and
fessionals’ help was the most common action parents took we actually received the diagnosis. I was almost in disbelief.
before diagnosis. At the point of knowing something was
wrong, they requested more direct and specific help than Another autism-naïve mother described the intense
in earlier steps—either for intervention to address spe- emotion of rapidly going from knowing something is
cific concerns or for referrals to specialists to definitively wrong to being convinced it was autism as, “the most
identify a problem. Parents actively sought referrals from unreal, anxiety-provoking, nightmarish feeling.” Many
family physicians, followed referrals or recommendations parents described confusion at first being told their child
from community-based professionals, and sometimes had autism, commonly seeking further information for
self-referred to community or regional child services—in clarification, usually on the Internet. Several parents who
many cases unaware that the underlying problem involved entered a state of shock after being informed their child
autism. had autism described closing themselves off to what pro-
Parents were also more insistent, motivated by certainty fessionals around them were saying.
that something was wrong and their mounting sense of Multiple professionals interviewed described how some
urgency. Parents therefore became frustrated when access parents’ outward expressions of denial could be confronta-
was blocked, such as by dismissive responses from profes- tional and heated, reflecting the threat this information
sionals. Because parents were certain about the existence posed to them emotionally. Parents in this situation clearly
of problems requiring intervention, they often expended needed more time for the early aspects of adapting emo-
extra personal resources (time, energy, money) to pursue tionally before being ready to engage. Upon reaching full
alternative solutions when obstacles blocked or delayed certainty of autism, however, parents’ motivation for
needed help. action rapidly increased.

Fourth step: being convinced it is autism.  Parents generally

reach the point of being convinced it is autism either by (a)
Discussion
reaching certainty independently after integrating the signs This in-depth account of parents’ early-stage process of
observed in their child with information about indicators coming to understand the child has autism fills two impor-
for autism or (b) after being informed by others with tant knowledge gaps: First, it provides a useful empirical
expertise. illustration of important theoretical aspects of the emer-
Most parents who described reaching certainty inde- gent process of parents navigating autism-related services
pendently recalled checking off many of the red flags for and intervention, supporting an earlier, broader report of
autism or noticing what they understood were distinct how caregivers become increasingly motivated and capa-
signs of “classic autism.” Other parents, meanwhile, ble of engaging in care (Gentles et al., 2019). Second, it
described how observing exceptions to classic autism provides a detailed account of parents’ social psychologi-
threw them off because such signs justified denying cal experience and action prior to diagnosis of autism,
autism, delaying them reaching certainty. Consequently, which has received little attention from a lifeworld, rather
parents could follow extended paths, involving numerous than clinically referenced, perspective.
professionals and extra researching, before becoming Parents’ experience of the diagnostic process has been
convinced of autism. Parents regarded such delays as characterized by numerous qualitative studies from multi-
avoidable and regrettable because they postponed early ple jurisdictions, including two systematic reviews repre-
intervention perceived as crucial to optimizing their senting 32 unique studies (Boshoff et al., 2018; Legg &
child’s trajectory. Tickle, 2019) and additional non-reviewed studies (e.g.
Only a minority of parents reached certainty after being Crane et al., 2018; Hennel et al., 2016; Ho et al., 2014;
informed by others—clinicians, trusted acquaintances, or Mitchell & Holdt, 2014; Singh, 2016; van Tongerloo, van
10 Autism 00(0)

Wijngaarden, van der Gaag, & Lagro-Janssen, 2015). contributed to the increased prevalence, spatial clustering,
Some of this literature covers parents’ pre-diagnosis expe- and decreasing age of diagnosis of autism in California over
rience, providing findings that are positioned as useful to time. Considering such contextual effects is useful to inform
clinicians supporting families before and around diagno- the appropriate integration of findings from individual stud-
sis. Importantly, and consistent with our research, a subset ies within qualitative syntheses across contexts—for exam-
of studies observed parents’ proactive engagement in pur- ple, by contextualizing older findings that conflict with
suing the diagnosis and otherwise seeking clinical help for more recent or local studies when they are explainable by
pre-diagnosis concerns (reviewed in Boshoff et al., 2018). ecological differences, such as the prevailing awareness and
For example, Carlsson and colleagues (2016) described acceptance of autism.
how Swedish parents prior to any clinical interactions had Indeed, the high levels of proactive engagement we
a low sense of urgency, initially perceiving their child as observed most parents reach during and after coming to
different in a non-worrisome sense—similar to our obser- understand their child had autism (Gentles et al., 2019)
vations for the initial step of forming an image of differ- may be a relatively recent Western phenomenon and be
ence—which then gave way to more proactive information subject to further change. Gray (2001) described three nar-
seeking. We also observed similar patterns to those ratives Australian parents used to create coherence from
reported in Boshoff and colleagues (2018), of parents “not the disordering effects of autism on the family and parent’s
feeling heard” (p. 5) by uncooperative clinicians on their identity: one that accepted the prevailing narrative of
pathway to diagnosis after identifying emerging concerns. autism offered by the local autism treatment center—
These empirical accounts of emerging pre-diagnosis action “accommodation”; and two less common ones that dis-
by parents should by now establish an important fact, cur- puted it—“resistance” by defining a more engaged
rently underrecognized in most other literature on parents’ advocacy role, and “transcendence” by drawing on reli-
engagement in autism services including diagnosis: that gious faith. In our study, conducted almost 15 years later,
parents often achieve some level of awareness and proac- most parents’ stories best fit the “resistance” narrative.
tive engagement with services before diagnosis and that More recent to Gray, Lilley (2011) described 13 Australian
diagnosis is rarely the first cue for seeking clinical care to mothers constructing counter-narratives along their varied
address autism-related concerns. pathways to diagnosis that best fit with “resistance,” ulti-
Notably, the available research usually traces pre-diag- mately providing a “temporary disidentification from the
nosis experience with reference to clinical processes and diagnostic process” (p. 207). Subsequently, based on inter-
interactions culminating in diagnosis, rather than parents’ views with 23 US families, Singh (2016) described how
independent meaning-making including interactions that parents both embraced the prevailing medical model (pur-
are not necessarily centered in the clinical world. While suing a clinical autism diagnosis) and challenged its limi-
this is useful for mapping experience through clinical path- tations from defining the disorder negatively. Responding
ways (as they vary by jurisdiction), it becomes problem- to parents’ disillusionment with limiting models, research
atic when aspects of parents’ internal experience are recognizing the value of strengths-based approaches in the
incorporated into a temporal arrangement referenced to the autism diagnostic setting has emerged (Sabapathy et al.,
external clinical event, diagnosis. For example, Legg and 2017), which may further change the contextual conditions
Tickle (2019), in temporally arranging parents experiences surrounding the parents’ increasing clinical engagement in
relative to the clinical diagnosis, place the processes diagnostic processes going forward.
“acceptance and adaptation” post-diagnosis. Their model This study was predominantly about mothers. Aware of
cannot, however, account for cases where these processes the risks of being “gender blind” (Ryan & Runswick Cole,
may happen before diagnosis. Similarly, Midence and 2009; Traustadottir, 1991)—where oppressive imbalances
O’Neill (1999) describe UK parents’ accepting their child’s in the roles and experience of mothers are rendered invis-
autism as integral to their child only as a post-diagnosis ible—we highlight some of the ways gender was relevant.
phenomenon. By considering parents’ meaning-making From the outset, we chose to focus primarily on mothers
from a broad set of interactions, not just clinical, we have since they were known to assume the most responsibility
demonstrated with specificity how comparable emotional for caring for children with special needs (Marcenko &
processes, including releasing culturally-based hopes and Meyers, 1991), engage most in autism care-related infor-
expectations for their child’s future, can also happen before mation seeking (Mackintosh, Myers, & Goin-Kochel,
diagnosis. 2005), and bear the greater stress burden (Gray & Holden,
A useful approach to interpreting transferability of find- 1992)—all of which proved empirically true in this study.
ings like ours, involving parents’ meaning-making and In addition, by examining fathers’ roles via mothers’
action, is to consider informational context, especially the accounts (and their direct participation in three interviews),
paths of diffusion and discourses arising from new scientific we observed interactions indicating both commonality and
knowledge. For example, Liu, King, and Bearman (2010) some gender differences. First, mothers generally spent
demonstrated how information diffusion simultaneously more time with the child, being more likely to stay at home
Gentles et al. 11

either for maternity leave or decisions to forgo employ- research has recognized as an early potential response to
ment; consequently, they were better positioned to per- signs of autism (Altiere & von Kluge, 2009; Boshoff et al.,
ceive and interpret signs necessary to understanding the 2018; Crane et al., 2018; Luong, Yoder, & Canham, 2009).
child had autism. Second, consistent with some research Denial was regarded with regret by some parents who rec-
(Legg & Tickle, 2019), fathers tended to hold onto denial ognized in hindsight it delayed them in seeking care, a
for longer, which made some uncooperative as partners, finding suggested recently elsewhere (Crane et al., 2018,
reducing mothers’ motivation and capacity for action and p. 3764). Second, some, but not all, parents pass through a
rarely, obstructing action at this early stage. These findings personal process of grieving, which delays them adapting
provide some explanation of how oppressive structures emotionally, specifically releasing culturally based hopes
relate to the early development of what has been described and expectations for their child’s future.
alternately as mothers’ “special competence” (Ryan & Importantly, these findings provide explicit rationale
Runswick Cole, 2008) and “warrior-hero identity” (Sousa, for separating and logically ordering any support to address
2011)—which have merely shifted the historical burden on these two delays to readiness—since denial that prevents
mothers to increased advocacy roles that, while more vis- accepting the possibility of autism must be overcome
ible, remain undervalued. before grieving is possible. This distinction is salient for
two reasons: (a) these processes are sometimes still con-
founded with each other in the literature (Fernańdez-
Clinical implications
Alcántara et al., 2016; Mitchell & Holdt, 2014) despite
This research reinforces the need for sensitivity to parents’ major concerns with a stage model of grieving (Stroebe,
widely varying states of awareness and understanding of Schut, & Boerner, 2017) and (b) the findings suggest that
their child’s autism when seeking to engage them at early appropriate clinical support should be tailored differently
stages of their clinical journey. It is reasonable to expect for denial than for grieving, in view of the fact that parents
that some parents at the point of diagnosis, for example, in this study described them as separate sources of delay to
may be far along in this process, having some foundational engaging in care.
knowledge of autism and being highly motivated to work Especially in early reports, grief has been portrayed as
with professionals who can help. For others who are still the standard response to receiving an autism diagnosis
early in this process, however, insisting on high levels of (discussed in Russell & Norwich, 2012). Consequently,
engagement, such as by providing extensive verbal or Ryan and Runswick-Cole (2008) note, “positive or even
written information at diagnosis, may have unintended neutral family experiences . . . remain under-represented”
psychological consequences and yield resistant or unmoti- (p. 202). By contrast, findings here suggest the importance
vated responses. Consequently, clinicians can consider of not treating grieving as a universal or necessary aspect
attending to two things: first, appraising the parent’s level of parents’ internal process. Not only did grieving arise
of motivation, which can range from ambivalence to pow- inconsistently for parents in this study, but one mother’s
erful insistence, as one indicator of how far they have pro- example of happiness at discovering autism derived from
gressed in a process defined by increasing urgency; second, her prior understandings suggests a useful alternative per-
probing the parent on what other information, profession- spective to balance the potential damage of grief-promot-
als, actions or work they have already engaged in as a ing perspectives. As autistic self-advocate, Jim Sinclair,
means to understand their readiness for engagement. articulated in 1993 (republished 2012), grieving taken too
Other work has emphasized the merits of attending to far may damage the parent–child relationship by implying
parents’ psychological support needs around the time of that the grieving parent’s love for the child they had
diagnosis to improve both family and child outcomes expected outweighs any love for the autistic child they
beyond what can be achieved by timely diagnosis and have. The perspective articulated by Sinclair (and other
treatment (Reed & Osborne, 2012). To support this, authors contributors to the neurodiversity movement) has likely
have advocated for autism-specific tools to assess parents’ influenced later parents’ attitudes and discourses, as Cascio
psychosocial functioning and support needs starting from (2012) observed. Indeed, the increasingly prevalent dis-
the time of diagnosis, which could be useful to connect courses like neurodiversity emphasizing strengths in
subgroups of parents to tailored intervention to increase autism appeared to explain some parents’ non-grieving
their capacity for engaging in care (Reed & Osborne, 2012; responses in our study, and highlighting this perspective
Zaidman-Zait, 2018; Zaidman-Zait et al., 2017). The find- may represent a constructive cognitive strategy to support
ings here highlight two important ways that parents vary parents struggling with grief.
that may be relevant to assessing, categorizing, and triag-
ing them to targeted psychosocial support. First, some par-
Limitations and next steps
ents must overcome the barrier of denial, a form of
avoidance that prevents them accepting and acting on the As acknowledged previously (Gentles et al., 2019), since
possibility of autism in the first place—which other this study included primarily mothers of younger children
12 Autism 00(0)

and adolescents with autism, the findings do not suffi- ORCID iD

ciently represent the perspectives of important subgroups Stephen J Gentles https://orcid.org/0000-0003-2004-1451
of Ontario parents, including fathers, and those for whom
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