Sociology of Health & Illness Vol. xx No. xx 2016 ISSN 0141-9889, pp.

115
doi: 10.1111/1467-9566.12437

Parenting work and autism trajectories of care

Jennifer S. Singh
School of History and Sociology, Georgia Institute of Technology, USA

Abstract

This study investigates the work and care associated with raising a child with
disabilities in the United States. Based on in-depth interviews with parents who
have a child with autism, it develops the notion of parenting work and trajectories
of care to investigate how parents navigate and coordinate the challenges of
getting an autism diagnosis, obtaining educational services, and re-contextualising
the possibilities for the future. I argue that parents embody a complex mix of love,
hope, and responsibility in parenting work and trajectories of care that expands
temporal and social elements of illness work and trajectories initially developed by
Anselm Strauss and colleagues. This type of parenting work changes over time
and is inuenced by social structural forces and relationships in which the care
takes place. The re-articulation of these analytic tools also begins to untangle the
intricate mix of both medical and social models of disability that parents embrace
and continuously negotiate. This study demonstrates how parents accept the
medical model of disability by seeking and pushing for a clinical autism diagnosis
and subsequent treatments, while at the same time challenge the limits placed on
their children by providing them with opportunities, possible futures, and a sense
of personhood.
A Virtual Abstract of this paper can be accessed at: https://www.youtube.com/
watch?v=x0UmGvpcjeQ

Keywords: autism, care work, parenting/parents, qualitative interviews

Introduction
In 1987, Emily Perl Kingsley wrote the poem, Welcome to Holland, in order to help people
imagine what it feels like for parents to raise a child with a disability. Kingsley described this
unique experience as planning for a trip to Italy but arriving instead in Holland, where some
people will stay despite their life long dreams of going to Italy. A sequel to this poem was
anonymously written to reect upon life in Holland over ten years later, a place that has become home. Although expectations for the trip have been altered, the poem describes how for
some parents, caring for a child with a disability has been an unanticipated journey, an unexpected gift, and a place of remarkable beauty. The experience of this new destination also
involves a lot of hard work such as gathering and reading new guidebooks, learning a new
language, and navigating a new landscape.
These two poems were brought to my attention by parents who have children with autism
because they eloquently capture their initial disorientation and subsequent readjustments of
raising a child with a disability. Some parents connected with these poems because they
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Jennifer S. Singh

offered a counter narrative of hope and future possibilities, a trajectory that can be overwhelming and multifaceted due to the potentially life long and constantly changing nature of autism
and the multiple symptoms and levels of severity associated with it. Further, there is no known
cause and/or cure and no clear consensus on the most effective treatments and developmental
outcomes. Thus, caring for and loving a child with autism can be an emotional journey for
parents, with many ambiguities and uncertainties tied to the clinical diagnosis, treatment
options, and possibilities for the future. In many respects, this leaves parents in a foreign
land with no guidebook on how to navigate the many twists and turns in the journey of parenting a child with autism. However, as the poems indicate, some parents proactively adjust to
an alternative destination, lead by love and determination as well as hope for themselves, their
family, and their childs future.
To better understand these unexpected journeys this article draws on and further develops the
notions of parenting work and trajectories of care, concepts that highlight the range of work conducted by parents of a child with a disability and the complexity of caring trajectories negotiated
by multiple people when recovering or living with a chronic condition (Allen et al. 2004, Corbin
and Strauss 1988). Unlike the analytic concept of illness trajectory, which has been useful for
analysing the management of chronic illnesses within the social organisation of medical work
(Strauss et al. 1985), trajectories of care takes into account the social context and relationships in
which parenting work takes place over time and in both private and public spaces.
This study investigates various types of parenting work and trajectories of care involved in
raising a child with autism in the United States. Autism is an important case due to its growing social, scientic, and cultural preoccupation. In the US, there has been a dramatic increase
in prevalence and awareness of autism over the last twenty years, affecting 1 in 68 children
(CDC 2014). Campaigns to detect autism earlier and the sense of urgency placed on parents to
begin early intervention are predominating discourses within autism communities. There have
also been tremendous investments in various areas of autism research genetics, neuroscience,
diagnosis, and treatment which have sparked considerable debate by parents and people with
autism about whether autism is a disability or a different way of being (Davidson and Orsini
2014, Singh et al. 2009). I contend that this growing awareness of autism has broadened the
scope and complexity of responsibility placed on parents and their interaction with notions of
disability. Within this context, I demonstrate how parents conduct a range of parenting work
driven by the emotional and loving relationship they have with their children. This type of
work often goes unnoticed and is embedded within a nexus of heterogeneity of symptoms and
severities, cultural preconceptions, and social structural barriers to diagnosis and services associated with autism.
In what follows, I rst briey review the original scholarship on illness trajectories and the
various types of work associated with the management of illness to identify how these ideas
can be used and expanded upon to understand the complex and nuanced experiences of parenting a child with developmental disabilities. Following a description of the research methodology, the results highlight the different types of parenting work and trajectories of care
embedded in three processes and interactions. These include: (i) navigating the challenges of
getting an autism diagnosis; (ii) negotiating social structural barriers to services; and (iii) recontextualising the possibilities for the future. Although these experiences are not unique to
parenting a child with disabilities (Green et al. 2013), I argue that these concepts offer a
renewed sociological lens that bring into focus the complex embodiment of both the medical
and social models of disability. I reveal how parents in this study embraced and resisted the
medical model of disability by seeking and pushing for a clinical autism diagnosis and subsequent treatments, while at the same time challenging the limits the medical model places on
their children by providing them opportunities, possible futures, and a sense of personhood.
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Parenting work and autism trajectories of care

Parents also experience the limits of the medical model when treatments and interventions
reside outside of the medical domain in the form of special educational services that are persistently inaccessible.

Illness trajectory, unending work, and trajectories of care

The sociological concept of trajectory refers to a course of action, as well as the interaction of
multiple players and unexpected contingencies (Strauss 1993). Within the domain of medicine,
the concept of illness trajectory was developed in order to analytically investigate the social
organisation of medical work conducted over the course of chronic illness in the hospital
(Strauss et al. 1985) and at home (Corbin and Strauss 1988). Importantly, illness trajectories
effects relationships among those involved, which can inuence the management and outcomes
of the course of illness (Corbin and Strauss 1988).
Trajectories of chronic illness are unpredictable and elicit different kinds of work, especially
among patients, kin, and staff who seek to control and cope with chronic illnesses (Allen et al.
2004, Boeije et al. 2002). In the hospital, various types of medical work are needed to manage
illness, which is conducted primarily by medical personnel (Strauss et al. 1985). In the home,
the management of chronic illness requires different types of work such as illness work (e.g.
taking medications or physical therapy), everyday life work (e.g. going to work or cooking
meals), and biographical work (e.g. dening and maintaining an identity within the context of
chronic illness) (Corbin and Strauss 1988). These various forms of work, and their contours,
are interconnected and variable depending on the severity of the illness, the type of illness trajectory, and the illness phase. According to Corbin and Strauss (1988), the organisation and
coordination of these various types of work is referred to as articulation work, which often
goes unnoticed and is invisible in the clinical record despite the high level of technical sophistication, expertise, and problem solving involved. Thus, understanding this work and biography in relation to illness at home is essential to understanding the management of illness and
the associated life experience by the ill and their families (Corbin and Strauss 1988).
Drawing on this research, Davina Allen and colleagues (2004) have developed the notion of
trajectories of care to address the limitations of illness trajectories that are situated only within
the medical model and stop short of explicitly conceptualising different types of trajectory
(Allen et al. 2004: 1012). By making linkages between individual trajectories of care to
broader health and social care systems in the United Kingdom, these scholars begin to disentangle why trajectories of care take on the course that they do. They accomplish this by paying
close attention to how social actions are intertwined with social networks that transform over
time. Temporal and social elements are important in the current study because the access, timing, and potentially long-term nature of caring for a child with autism in the US is situated
within a healthcare system that does not have equal access to diagnosis, treatment, and services (Shattuck and Grosse 2007). Further, the US education and health care systems do not
guarantee long-term care for people with autism who are unable to live independently as adults
(Bumiller 2013). Thus, the social context in which parenting work takes place inuences the
types of trajectories of care that unfold over time.
This article expands and further develops the analytic tools of parenting work and trajectories of care in the context of autism and offers key areas of analytic distinction. First, within
the organisation of work, this paper focuses on the work of parents as opposed to chronically
ill or recovering patients, their spouses, or other care personal. I argue that the relationship
between parents and their child with autism elicit different levels of social interaction and
expectations that alter the kinds of work conducted. Further, distinctions between illness,
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Jennifer S. Singh

everyday, and biographical work are not clear divisions of labour but intertwined and negotiated together since parents must alter their familys everyday life and future expectations for
their children and themselves in signicant ways. Thus, parenting work moves beyond the
home to different social spaces over the course of a lifetime.
Second, unlike life-threatening childhood chronic illnesses such as cancer, congenital heart
disease, or cystic brosis (Cohen 1995), autism is not necessarily considered a life threatening
illness but rather a syndrome or spectrum of disorders. It is diagnosed as autism spectrum disorder (ASD) and consists of a range of social communication and interaction challenges, as
well as restricted and repetitive patterns of behaviour, interests, or activities (APA 2013). The
lack of distinct physical abnormalities in autism makes it potentially invisible to people outside
of a familys network, which can compound the stigma associated with socially unacceptable
behaviour, as well as resistance to parent concerns (Blum 2015, Gray 2002). Depending on
the level of symptom severities, a child with autism may also require long-term care. Thus, for
some parents, caring for a child does not end at a certain age and may be continuous throughout the lifetime of the caregiver.1
Similar to illness trajectories of various chronic health conditions, autism has uncertain and
highly variable futures. However, unlike chronic illnesses, which usually involve deterioration
of the body over time, children diagnosed with autism are continuously developing physically
and mentally throughout their life. This can result in range of outcomes depending on the
severity of symptoms and the opportunities for emotional, social, and cognitive development.
As I discuss below, the range of parenting work involved in providing these various opportunities shapes trajectories of care, which changes over the course of a childs lifetime and
requires social capital and networks of support that are not equally available to all parents and
their children with autism.
Based on these distinctions, this paper offers a new way of contextualising trajectories of
care and the work associated with parenting a child with autism in the US. It analyses the various contours of parenting work within the social context of the rising cultural awareness and
prevalence of autism, persistent limited resources, and the loving commitments of parents to
help their children reach their fullest potential. Further, the re-articulation of these analytic
tools helps to untangle the nuanced and complicated experiences of parenting a child with autism and the embodiment of both the medical and social models of disability.

Methods and analysis

The arguments presented here are based on qualitative data collected as part of a larger study
investigating the social and scientic meaning of autism from the perspective of scientists who
study autism, parents who have a child with autism, and adults living on the autism spectrum
(Singh 2016). One aspect of the study involved in-depth interviews with parents of a child
with autism. Respondents for the current study were recruited through a yer sent to 300 families who participated in local clinical research.2 Parents interested in being interviewed contacted the author to schedule an interview. As I address in further detail in the discussion, this
sample is not representative of all families who have a child diagnosed with autism in the US
and reect a particular set of parents who have the social and cultural capital needed to conduct the types of parenting work and trajectories of care analysed in this paper.
The data analysis is based on twenty-three families interviewed during May 2009October
2012. Nineteen family interviews consisted of the mother only and four family interviews
consisted of both the father and mother.3 Fourteen interviews were conducted face-to-face at
either the parents home or another location, and nine interviews were conducted over the
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Parenting work and autism trajectories of care

telephone. Each interview lasted between 12 hours, was tape-recorded, fully transcribed, and
uploaded to HyperRESEARCHTM (Version 3.5.2; ResearchWare, Inc. 2014) qualitative data
analysis software.
The data was analysed using grounded theory methods in order to develop and rene ideas
based on responses to questions that addressed parents experiences of raising a child with autism and how this has affected their everyday life. Constant comparative method and focused
coding were utilised in order to synthesise and conceptualise parents experiences into categories (Strauss 1987). The conceptual categories that emerged explicated events, incidents,
actions, and/or social processes in the data (Strauss and Corbin 1990). This paper is based on
theoretical memos developed for the conceptual categories of the type of work associated with
obtaining a diagnosis, advocating for services, and readjusting expectations for the future.
These memos helped to elaborate the processes, assumptions, interpretations, and actions covered by these categories, which were then associated with trajectories of care. The Institutional
Review Boards at University of California, San Francisco, and Georgia Institute of Technology
approved the study.

Results
The diagnostic quest
The process of getting a diagnosis is one of the rst kinds of illness work described by Strauss
et al. (1985) in part, because it requires time, resources, and various levels of uncertainty. In
the poem, Welcome to Holland, parents arrive unexpectedly and without any warning to an
unanticipated destination. For autism, as well as other developmental disabilities, this arrival is
evident once parents receive a diagnosis. However, in most cases, the parents in this study
observed various warning signs that foreshadowed a diagnosis. Most parents suspected something was wrong around their childs rst or second birthday based on a range of symptoms,
such as: being obsessed with things, not talking, or not being very social. Despite these
concerns, parents often found pediatricians, educational professionals, and even other family
members unwilling to acknowledge that something might be wrong. For example, Mary, who
has a son recently diagnosed with ASD, described how their pediatrician was adamant that her
son was not autistic despite the concerns she shared with her husband. This made the process
of getting a diagnosis very difcult, Mary stated:
I found it very challenging because when we rst suspected that there was something wrong
with our son it was so hard trying to nd a doctor that would listen to us . . . Our doctor
was adamant that he was not autistic and fought me on it.
Mary went on to explain how their pediatrician was furious when the school psychologist even
suggested that their son was showing signs of autism. They eventually got a diagnosis of autism for their son when he was seven years old. The lack of acknowledgement of these concerns was a frustrating process for parents, especially when symptoms were relegated to
comments made by pediatricians such as hes just a boy, or he just needs to grow up.
Many parents in this study encountered lack of acknowledgement to their worries of early
signs of autism, especially from their childs pediatrician.4
Without medical acceptance or legitimisation of the symptoms, parents had to nd alternative avenues to gain medical acknowledgement of their worries. One form of work was standing up to the rejection of their pre-diagnostic concerns and navigating ways to nd a medical
professional who would listen. This work entailed conducting research on symptoms their
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Jennifer S. Singh

child was presenting and nding clinical specialists who were qualied to evaluate children for
autism. For example, Sandra began to learn about autism when her son was not talking at age
three. She investigated and learned about other symptoms that seemed unusual such as her
sons obsession with wheels. Even though the doctor dismissed her concerns, Sandra continued to seek out a diagnosis from other clinical professionals and preemptively enrolled her son
in speech and occupational therapy. Three years later, she was able to get a diagnosis of autism for her son.
Despite Sandras success, she was quick to point out that this kind of work was available
to only educated, in the loop families who can nd ways around getting an autism diagnosis. Several parents in this study strategically obtained a diagnosis even through they felt
their child did not necessarily t neatly into a strict diagnosis of autism. For example, one
set of parents, Regina and David, recalled their decision to get a diagnosis of autism to
qualify for a transitional kindergarten that would accommodate their sons special needs.
Another parent, Diane, indicated that she and her husband sought a diagnosis of autism for
their son to get insurance to cover different therapies such as applied behaviour analysis
(ABA). These actions demonstrate how parents strategically conducted certain forms of parenting work in order to qualify for needed services. In these cases, the medicalisation of autism in the form of a clinical diagnosis beneted parents who were seeking medical
legitimacy in order to access or qualify for different types of therapy and/or services for
their child (Valentine 2010).
Another barrier to getting an early diagnosis were the long wait times to get a clinical evaluation, which could be up to a year due in part to the lack of trained professionals who can
diagnose autism in the US (Chiri and Wareld 2012). Any delay in getting a diagnosis is a
problem based on the current belief that children must start intervention therapies as soon as
possible in order to have the best possible outcomes (Rogers and Vismara 2008). This sense
of urgency creates a level of anxiety and obligation for parents, who see the clinical diagnosis
as a gateway to accessing and starting early intervention. For example, Mary felt that her persistence in getting a diagnosis paid off. She stated:
If I had not pushed for my son to get tested, even though he wasnt the right age to be
tested, he would be worse off than what he really is right now because I have had him in
therapy since he was three years old. You know, he would have been worse off.
This parent, like many others, sought a diagnosis to help her son achieve the best possible
outcome. This persistence was also evident in obtaining a diagnostic evaluation through the
educational system. For example, Amber who has twelve-year old twin boys with autism,
described how she kept pushing and pushing the school system to conduct a psychological
evaluation after ve years of rejection for one of her sons. Once she got the school psychologist to see her son, they could not understand why it took her so long to bring him in.
These stories begin to map out the various kinds of work orchestrated by parents during the
initial diagnostic stages and how parenting work shapes trajectories of care through earlier
diagnosis and subsequently, access to earlier treatment and interventions. It also reveals how
parents are approaching the concerns of their child through a medical model of disability by
seeking out a clinical diagnosis of autism to get targeted services. However, at this stage parents are not necessarily questioning how the medical diagnosis reinforces disempowering interpretations of disability and impairment (Fisher and Goodley 2007) and the boundaries it places
on the future of their children. As I demonstrate next, although parents operate under a medical model in seeking a diagnosis and treatment, they begin to recognise the limits of the
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Parenting work and autism trajectories of care

medical model as they navigate social and structural barriers when accessing immediate and
long-term services.
Arriving and negotiating an alternative terrain
Upon receiving a diagnosis, many parents were relieved because it medically legitimised what
their child was going through and presumably offered a course of action. In many cases, however, parents were dismayed with the limited guidance they received after their child received
an initial diagnosis. They felt that many clinical professionals were unaware of the type of
treatments and services available and offered limited resources that could help. One parent,
Debbie who has an eight-year old daughter with autism expressed her frustration with the
uncertain advice and understanding of potential outcomes and foreseeable actions she could
take:
Once we got the diagnosis and it was conrmed, our frustration was, okay she has it. Now
what do we do? And they said, well, its a life-long condition, there is no cure. Good luck.
The whole process of it has been frustrating. There are not enough resources available to
families with autism in my opinion. There is not enough money to pay for everything that
these children need and there is not a very good clearinghouse of information to say, this
is what your child has and this is what you need to do.
Many parents had similar stories of frustration, especially parents of teenage children due to
the limited information available fteen years ago and lack of awareness among pediatricians
compared to today.
The lack of guidance and support offered to parents after receiving a diagnosis initiated
many different forms of parenting work. First, parents emphasised how they had to do their
own research and learn everything they could about their childs condition, a process Corbin
and Strauss (1988: 30) refer to as lling in. This work involved reading scientic and popular books, articles on autism, or information on the Internet that would garner clarity on what
the diagnosis meant and what they could do to help their child. Parents attended seminars on
autism and learned how to become self-advocates. They also developed expertise on treatments
that would address their childs specic needs such as gluten and casein free diets, picture
exchange systems, oor time, occupational therapy and speech therapy, just to name a few.
One mother, Diane who has a thirteen-year-old son with autism described how she learned to
teach him with visual schedules in order to provide a structured environment at home. She
was concerned that her son would do nothing if he was not given explicit verbal prompts
and integrated visual schedules to help him initiate activities at home such as making a snack
or learning independent skills such as taking a shower. A unique aspect of autism is the extensive range of treatments and therapies available, many which have limited scientic evidence
to support efcacy. Hence, parents have the responsibility to not only negotiate and understand
the various symptoms and severities associated with autism that continuously changes over
time, they must also sift through and test the various and often expensive approaches that target specic components of their childs autism. Here we begin to see the limits of the diagnosis and treatment model embedded in the medical model for conditions like autism that have
various symptoms, severities, and limited treatment options.
Within the realm of education, parents emphasised the signicant amount of work required
to manage and organise special educational services, which continuously alters as children
develop and grow older. In the US, a diagnosis of autism has considerable currency because it
opens up a pathway to educational services through the Individuals with Disability and Education Act (IDEA), which mandates that all eligible children (including children with autism)
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Jennifer S. Singh

have the right to a free and appropriate education that meets their unique individual needs
(IDEA 20 USC. 1400 2004). Consequently, in the US, the educational system has become a
place where parents must negotiate and align a labyrinth of paperwork, people, and places in
order to create new possibilities for the future. The parenting work in this domain consisted of
advocating for broader change within school districts, such as being vocal within the school
district, participating in board meetings, or speaking up when schools tried to cut budgets for
special education services. For example, Linda fought the educational system for over ten
years to gain services for her fteen-year-old son. She recognises how her persistence and
hard work affected the quality of his education and feels everyone should have the same
kinds of opportunities. As a result, she advocates for other parents who do not have the kind
of skills needed to demand for these services.
In the classroom, parents were extremely involved in helping to shape their childs educational setting. For example, Diane described how she consistently requests more homework
she could do with her son, works with the teachers to make a weekly plan, and essentially
coordinates every aspect of her sons education to ensure he is getting the best possible services. This type of involvement was common, in fact, all of the parents I interviewed advocated for some type of benet that would help their child in the classroom setting. Parenting
work in this space took the form of putting pressure on the schools to mainstream their kids
into a typical classroom, integrating new ways of teaching children with autism, or spending
months preparing for their childs individualised education programme (IEP). An IEP is a document that assesses individual student needs in order to qualify for special educational services
in the US. Developing and implementing the IEP requires the coordination of teachers, parents, other school staff, and often the student. Parents described the IEP as one of the most
stressful aspects of parenting work because of the careful negotiation they had to make with
teachers, administrators, and related service personnel on the educational needs of their child.
This form of work clearly moves beyond the bounds of illness and everyday work described
by Strauss and colleagues, and expands the articulation work conducted by parents to public
places such as the educational system. It requires parents to coordinate all the professionals
involved in their childs educational services, while at the same time carefully navigating various power dynamics that exist in the IEP. For example, Sandra who is a parent and a lawyer,
described the yearly IEP meetings as a power struggle, she stated:
There is truly a technique to how you maneuver getting the services you need and how you
maneuver just the relationship dynamic between teachers and the administrators and yourself. There is a power struggle, unfortunately, that goes on and as a parent you have to be
very careful.
Another parent, Linda, had an IEP go on for 23 hours because she refused to quit. She stated,
if a parent doesnt come in and insist that they get services for their child, rarely is their child
going to be getting services. The parents in this study conrm that even though there is a US
federal mandate to provide special educational services through IDEA for children diagnosed
with autism, they still had to work hard get these services for their child. Understandably, this
was a source of much frustration for parents and was a site of tremendous parenting work
needed to shaped autism trajectories of care. The realm of work required within the educational system also reinforces the limits of the medical model when treatment models move outside of the medical system to public goods like education that are persistently inaccessible to
families who have children with disabilities.

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Biographical work: altering expectations

The journey to Holland does not end with a diagnosis and access to services, it requires learning to adjust and accept life with autism on a daily basis. Unlike the processes described
above, which operate under the medical language of diagnosis and the limits of the medical
model when treatment is associated with inaccessible special educational services, parents also
performed biographical work as they re-oriented and adjusted to life with a child that does not
t the normative expectations of our society. Landsman (2003) demonstrates how parents who
have children with developmental delay plot for their childs personhood by bringing them
into the discourse of struggle and progress, which may change overtime when their childs
ability does not match American conceptions of normal. This section highlights the work
taken up by parents to give new meanings to autism and validation of personhood for their
child. Here, parents begin to take up the social model of disability discourse by challenging
the limited and narrow possibilities given to their children, focusing instead on their childs
abilities and strengths, possible futures, and counter-narratives to a disabling diagnosis
(Fisher and Goodley 2007, Lilley 2011).
As indicated earlier, parenting work and trajectories of care are set in motion when a diagnosis is achieved, which under the medical model can set boundaries and limits to the potential outcomes of children with developmental disabilities. Although receiving a diagnosis
provided a sense of relief, many parents expressed how devastating it was to hear from a medical professional that autism was a life-long condition with limited treatments and no cure. For
example, Debbie, a parent of an eight-year-old daughter, recalled her feelings of despair after
getting the initial diagnosis and being told what she should expect for her child:
When they rst gave us the diagnosis, it was actually very grim. [They said to us], dont
expect reciprocal affection, dont expect eye contact, dont expect I love yous, dont expect
friends for her . . . I mean, it pretty much left you with no hope. At the end of it, they even
said that we should start looking into institutions for her. This is a two year old and that
was a very tough thing to hear.
Similarly, another mother, Cindy who has an eighteen-year-old son with autism, remembers
how the doctors predicted that her son would never write or learn to do maths and that they
should consider putting him in an institutional home when he was four years old. Despite the
ten-year difference in age between these two children and the increased awareness of autism
over the last fteen years, these experiences were evident for parents with older and younger
children, especially with regard to the narrow boundaries of what to expect for children with
autism.
Parents indicated that since they were generally given minimal hope for the future they had
to create their own destiny by challenging what was expected of their children. In this regard,
biographical work involved challenging limited expectations placed on their children by shifting hope into action. For example, Debbie reected that after she was told to institutionalise
her daughter, everything changed. She stated:
Saying that (there) is no hope for her, (means that) the hope that we are going to have for her is
going to have to come from us. Were going to have to create that. Weve done our best, and
here we are a little over six years later since the diagnosis, (my daughter) tells me that she loves
me, she loves to give me hugs, she looks me in the eye . . . she says prayers at night, shes
thankful for her tutor and her speech pad, and for friends, and for birthday parties she gets to
go to. And so a lot of what they said in the beginning, although extremely disheartening, just
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Jennifer S. Singh

made you realise that the burden of creating those opportunities for your child is going to completely come back to you, personally as a mom and your entire family.
Debbies account reveals how despite limited hope given to her family about the prognosis of
their daughter, creating opportunities that challenged the limits placed on her child were an
important component of parenting work and trajectories of care. Similarly, Cindy challenged
the fate given to her son by not accepting the boundaries placed on his future when he was
three years old. When he graduated from high school, she stated, I wish everybody that told
me that [our son] would never do math, would never write, would never talk, would never do
anything, was standing there. Like many other parents, Cindy worked hard to provide opportunities for her son to reach accomplishments that were not expected of people with autism.
This required parenting work in everyday interactions such as teaching and practising eye contact and other social cues. Many parents were also insistent on providing social experiences
for their child such as participation in sports, drama, and family functions so that their children
would learn how to adjust in social situations.
Parents also challenged and shaped their childs sense of personhood beyond the medical
boundaries of autism by emphasising their childs sense of humour, social and communication
skills, or abilities to care for someone and do things for themselves. Many parents underscored
how smart their children were and commented on their childs remarkable memory skills. In
some cases, parents described their child as just like a normal kid who likes to play outdoors
with their siblings or friends. Several parents also referred to autism as a difference and not a
disability. For example, Victoria, who has a four-year-old son with autism asserted, autistic
children and adults can get to and achieve the same things as regular kids, they just get there
in a different way. This parent viewed her childs autism as a different mode of thinking that
people should view as a wonderful variation of humanity. In these cases, we see how parents
are giving new meaning to autism and validating their childs sense of worth and personhood
beyond the limitations placed on people with autism by advocating a discourse of personhood
and acceptance for their childs differences. This discourse mirrors neurodiversity movements,
which are emergent forms of activism comprised of autistic individuals and others who want
to celebrate atypical brain function as normal human difference and not a disability (Bascom
2012, Davidson and Orsini 2013).
In addition to challenging the diagnostic and medical boundaries placed on children with
autism, parents also had to alter their own expectations of their children, especially as their
children grew older. For example, Amber who has twin boys with autism described how she
had to let go of her own dreams for her sons and let them be who they are, and who they are
meant to be. As she saw it, her job as a parent was to just help guide them and give them the
best opportunities for the future. What she wanted most was to provide opportunities that
would allow her children to be anything they want to be. As long as they are happy, and successful, and can take care of themselves. The unpredictable developmental outcomes of children and adults with autism required that parents continuously readjust their expectations by
developing new markers of success over time. For parents with older children, altering expectations for the future required a shift in parenting work that focused on teaching their children
independent living skills. Linda described how the expectations for her fteen-year-old son
have changed in the following way:
So, right now, what we concentrate on are things he needs to do to be out in society . . . we
work on, how to ride the bus? How to stand in line? How to go and pay for something in
the store? And, how to make a list of groceries that you need? So, we are changing to a lot
of life skills.
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This parent, like many others, was altering the expectations for her son, as he grew older.
Instead of thinking of college, a prestigious career, or many other life events as people reach
adulthood, this parent was working to prepare her teenage son to live independently and get a
full time job when he gets older. Another mother named Cheryl who has a thirteen-year-old
son with autism was creating a business that would enable her son to work and generate
income for himself when he got older. Her actions were based on her concern that no job
opportunities will be available for him in the future. From these examples, we see how parents
are working with and for their children to establish everyday life skills that will be essential in
the future. These parents want the best for their children, which undoubtedly required readjusting their expectations along the way.

Conclusion: navigating autism trajectories of care

The experiences of raising a child with disabilities has been qualitatively investigated for decades to reveal common themes such as family crisis and stress, socially imposed barriers to
services, and action taken by parents to seek information and resources they need for their
children (Green et al. 2013). Situated within social science, feminist, and disability studies, a
recent shift in this literature has been towards the resistance against disabling processes and
alternative narratives of critique to the linear medical model of disability (Fisher and Goodley
2007, Hanisch 2013, Landsman 2003). Qualitative research on the experiences of parenting a
child with autism reveals how parents are reworking the diagnosis to focus on abilities that are
often associated with autism to account for their childs full personhood (Gray 2001, Lilley
2011, Valentine 2010). Several autism studies examine the emotional and cognitive work of
parents who challenge professional expertise and assert normality in their lives (Lilley 2011,
Ryan 2010, Sousa 2011).
To add to this rich body of research and growing trend toward parents embracing a social
model of disability, the current study builds upon and develops the analytic tools of parenting
work and trajectories of care within the context of autism. It takes into account how parents
and their interactions with their children and larger social networks, perceive, live with, and
respond to symptoms and disabilities through a complex mix of both the medical and social
models of disability. Sociologist and disabilities scholar, Tom Shakespeare (2006), offers an
interactive model to disability as both individual and social; both biological and cultural, an
approach that helps to explain recent trends in qualitative research of parents experiences of
raising children with disabilities (Green et al. 2013). By utilising and expanding upon the analytics of parenting work and trajectories of care, this study further articulates the complex and
nuanced interaction between the medical and social models of disability from the perspective
of parents who have a child with autism. On the one hand, parents must perform work within
the reality of living with daily challenges of social and communication barriers, physical and
psychological needs, and the various behavioural symptoms experienced by children with autism. These individual and biological consequences of autism are very real and affect the lives
of families, which help explain why parents work hard to access a medical diagnosis and treatment. When seeking an initial diagnosis, these parents operate under assumptions of a medical
model of disability and the urgent need to start interventions as soon as possible, which is a
predominate medical discourse in childhood developmental disabilities. On the other hand, parents must negotiate limits of the medical model when treatment is in the form of inaccessible
special educational services and the medical diagnosis constricts life outcomes of their childs
future. Further, this paper demonstrates how the resistances to parents concerns and lack of
subsequent support are generated from multiple public and private spaces, which parents must
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Jennifer S. Singh

challenge, negotiate, and alter in order to help their children reach certain life potentials that
only they can imagine.
Taken together, these various types of parenting work extend the boundaries of illness work
initially proposed by Strauss and colleagues to include new contours of work associated with
the daily challenges of addressing the needs of children with life-long disabilities, but also the
expanded work needed to shape certain trajectories of care. These trajectories are inuenced
by the emotional and loving relationship parents have with their children, their individual
responsibility to take action in the wake of limited social resources, and their hope and desire
to create better futures for their children. An important distinction is how parenting work comprises the development and use of many forms of knowledge and expertise including loving
and emotional knowledge that parents harness to productively shape trajectories of care. In
doing so, they are converting the love of their child and hope for their future into actionable
manoeuvres that they feel will benet their childs life (Lappe 2014, Lilley 2011, Silverman
2011, Sousa 2011). Whether it was challenging diagnostic boundaries, advocating educational
services, or asserting positive meanings to autistic personhood, parents are imagining and making real the unanticipated landscapes and futures for their child. I argue that the work associated with parenting a child with a disability expands the boundaries of medical work and is
embedded in a complex web of multiple clinical, educational, social, and personal domains.
As I demonstrate, this form of parenting work takes on the responsibility of locating, assessing, and coordinating everyone involved in the care of a child with autism, which changes
over time and encompasses bi-directional ows of disorientation, adjustment, and acceptance.
Thus, biographical shifts experienced by parents not only require reimagining a different future
for their children, but also shifts for themselves in what it means to be a parent now and in
the future. Part of this shift can be experienced as a loss, particularly when parents encounter
problems accessing services for their child, which can potentially impact their childs future.
Biographical shifts in parenting work are also situated in the fundamental responsibility
placed on parents to take care of their children with developmental disabilities, especially in
the wake of the deinstitutionalisation of mental health in the US (Bumiller 2013, Eyal et al.
2010). Within a neoliberal context, part of this obligation is for parents to provide an environment that will enable their children to live meaningful and productive lives. These aspects
of parenting work shape trajectories of care, which make it uniquely distinct from previous
notions of illness work of patients and their illness trajectories. Framing parent actions as a
form of work also helps to bring recognition of how specialised and important this type of
work is in shaping the trajectories of children with disabilities. It makes evident how and why
this work combines both medical and social models of disability and the unique nature of
work and care involved when parents are the obligated caregivers of a child with a disability,
which can potentially last over a lifetime.
The types of parenting work and trajectories of care analysed in this paper are also contingent on a range of social structural factors. This study shows how the work of parents takes
signicant amount of time, resources and money; social and cultural capital that can determine
a parents ability to challenge diagnostic uncertainties, access special educational services, or
provide a range of opportunities for their child. Neoliberal imperatives such as I want him to
the best he can be and the metaphor of planning a trip to Italy assumes that parents have the
time and means to travel to such destinations and the resources to adapt and adjust to alternative ways of living. These parents created trajectories of care that may have taken a different
course if they did not have resources to navigate the many barriers associated with the diagnosis, treatment, and services associated with autism. For example, the parents in this study were
able to make expensive accommodations such as moving to a new city or state to access better
services or buying a second home near extended family to provide a stable living space for
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their child while on vacation. Thus, the parenting work and trajectories of care identied in
this study required a certain level of social and cultural capital. This is reective of sociological research that shows how higher levels of parental education and access to economic and
neighborhood-level diagnostic resources are associated with an increase in the likelihood of
diagnosis (King and Bearman 2011, Mazumdar et al. 2013). The parents in this study were
middle to upper middle class families and connected to local autism clinics that offer services
in an urban setting. Thus, they were poised to engage in parenting work that extended beyond
what might not be conceivable in less privileged family circumstances.
By taking into account these parent perspectives, this article makes visible the social and
emotional interactions involved in parenting work and the processes by which parents have
become active participants in shaping trajectories of care. Parenting work in this sense illuminates how and why parents embody their childrens autism and the ways in which they continuously negotiate and challenge the medical and social models of disability. These various
forms of work move beyond the original notions of illness work and the management of
illness trajectories to new temporal and social spaces that need to be recognised and acknowledged as more children are being diagnosed with developmental disabilities in the US and
beyond.
Address for correspondence: Jennifer Singh, Georgia Institute of Technology, School of History and Sociology, 221 Bobby Dodd Way Atlanta Georgia 30332-0225 United States. E-mail:
jennifer.singh@hsoc.gatech.edu

Acknowledgements
I would like to thank all the parents who participated in this study and shared their stories of autism, as
well as three exceptional readers Anne Pollock, Mary McDonald, and Nassim JafariNaimi for their
thoughtful review of all stages of this manuscript. I am also indebted to the constructive critiques offered
by the anonymous reviewers for Sociology of Health & Illness. The Ivan Allen College of Liberal Arts at
Georgia Tech and the University of California, San Francisco Department of Social and Behavioral
Sciences nancially supported this study.

Notes
1 In general, US federal and state benets lack available services and supports for adults with autism
(Bumiller 2013).
2 For details of this clinical study, see Singh (2015).
3 Although most of the parents consisted of married couples of middle to upper middle class, many of
the fathers were not available because the interviews took place during typical working hours. The
over-representation of mothers is consistent with studies that identify mothers as the primary caretakers of children with disabilities.
4 Only three families indicated their pediatrician was helpful during the diagnosis.

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