PARENTS AS EXPERTS: AUTISM AND PLANNING THE FUTURE
By
Laurentia Rosu
Bachelor of Social Work, University of Bucharest, 2002

MAJOR PAPER SUBMITTED IN PARTIAL
FULFILLMENT OF
THE REQUIREMENTS FOR THE DEGREE OF
MASTER OF SOCIAL WORK
in the
School of Social Work and Human Services
UNIVERSITY OF THE FRASER VALLEY
Spring 2018

All rights reserved. This work may not be
reproduced in whole or in part, by photocopy
or other means, without permission of the author.

ii

Approval
Name: Laurentia Rosu
Degree: Master of Social Work
Title of Thesis: Parents as experts: Autism and planning the future

Examining Committee:
Anita Vaillancourt, BSW/H, MSW, PhD
Faculty, School of Social Work and Human Services
MSW Chair

Lisa Moy, BA, BSW, MSW, PhD, RSW
Senior Supervisor
Faculty, Social Work and Human Services

Robert Harding, BA, BSW, MSW, PhD, RSW
Supervisor
Faculty, Social Work and Human Services

Date Approved: April 16th, 2018

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Table of Contents
Abstract ...................................................................................................................................... v
Acknowledgments..................................................................................................................... vi
Introduction ................................................................................................................................ 1
Literature Review....................................................................................................................... 3
Autism: Historical Perspectives ............................................................................................. 4
Autism: Current Perspectives ................................................................................................ 6
Medical Model versus Social Construction Model ................................................................ 8
Disability and Stigma ........................................................................................................... 10
Parental Concerns and Struggles.......................................................................................... 11
Social Workers Role in Supporting Family with an ASD Member ..................................... 13
Solution-focused brief therapy. ........................................................................................ 14
Mindfulness therapy. ........................................................................................................ 16
Social workers’ calling. .................................................................................................... 17
Theoretical Framework ............................................................................................................ 19
Human Rights Model ........................................................................................................... 20
Young’s Model of Oppression ............................................................................................. 21
Design and Methodology ......................................................................................................... 22
Recruitment .......................................................................................................................... 23
Data Collection and Analysis ............................................................................................... 23
Ethical Considerations ......................................................................................................... 24
Findings.................................................................................................................................... 25
Worries of Parents About the Future of Their Child with ASD ........................................... 26
The parents will not always have the power to help their children. ................................ 26
Parents’ concern related to their children’s constant need for help and support. ............. 27

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The parent’s anxiety related to their children’s ability to care for themselves when they
become adults................................................................................................................... 29
Barriers Faced by Parents While They Try to Plan the Future of their Child with Autism . 29
Late diagnosis. ................................................................................................................. 29
Professional language. ..................................................................................................... 30
Financial resources........................................................................................................... 32
Summary of Findings ........................................................................................................... 33
Limitations of the Study....................................................................................................... 33
Implications.............................................................................................................................. 34
Implications for Practice ...................................................................................................... 34
Implications for Policy......................................................................................................... 34
Implications for Research .................................................................................................... 35
Conclusions .............................................................................................................................. 35
Appendix A .............................................................................................................................. 37
Appendix B .............................................................................................................................. 38
Appendix C .............................................................................................................................. 39
Appendix D .............................................................................................................................. 42
References ................................................................................................................................ 43

v

Abstract

The purpose of this research is to explore how parents of children with autism plan the future
of their child. In the literature review, I discuss historical perspectives and current
perspectives about autism, disability and stigma, and the ways in which parental concerns and
struggles play a significant role in planning the future of a child with autism. With the Human
Rights Model as a foundation for a theoretical framework, this research project is based on
open ended interviews with four research participants. Interviews produced two major
themes. The first theme concerns parental worries such as lack of power to help children with
autism and concerns about their child’s need for care and support. The second theme relates
to barriers such as late diagnosis, professional language, and financial resources. In summary,
the results of the interviews indicate that all participants believed in the importance of
planning. The implications of this research are that planning the future for children with
autism looks different for each parent given that each person with autism is unique, and every
family’s experience is different.

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Acknowledgments
I would like to thank both the University of the Fraser Valley Faculty of Social Work and
MSW classmates for providing me the guidance and support that encouraged me to continue
and complete this program.

I would like to express my profound appreciation to Dr. Lisa Moy, my research advisor with
unending patience. Thank you for your willingness to guide, support and encourage me
through this challenging process. To Dr. Robert Harding, my second reader, I would like to
thank you for your invaluable insights.

I would also like to thank my children and my husband for their patience, support, and
encouragement. I am so blessed to have you beside me.

AUTISM AND PLANNING THE FUTURE

"Children are the world's most valuable resource and its best hope for the future."
(John Fitzgerald Kennedy as cited Perlich & Whitt, 2010, p. 100)
Introduction
The family plays a significant role in the lives of their children and raising a child is
most often a source of great joy but raising a child with autism is uniquely challenging. As
Schor (2003) writes, “families are the most important and most enduring force in a child’s
development” (p. 1541), and a primary support for children with autism. Parents of children
with autism spectrum disorders (ASD) struggle with an increased risk for acute and chronic
stress compared to parents of children without disabilities and parents of children with other
developmental disabilities (Davis & Carter, 2008; Vallotton, Harewood, Froyen, BrophyHerb, & Ayoub, 2016).
The term “disability” has a negative connotation because the term implies
someone/something is broken or not working properly, and society very often uses improper
expressions to create negative images about people with disabilities (Zhang & Haller, 2013, p.
323). The diagnosis of a disability has a significant impact on the well-being of the
individual and entire family as well (Schertz, Karni-Visel, Tamir, Genizi, & Roth, 2016).
According to the Canadian Survey on Disability from 2012, people with disabilities represent
14.8% of the total Canadian population over the age of 15 and most of them live with family
(Canada, 2015, Table 1.11).
The number of children diagnosed with ASD is increasing (Adak & Halder, 2017).
The most used definition of autism is based on the Diagnostic and Statistical Manual of
Mental Disorders (DSM) 5th Edition (DSM-V) that defines autism as a dyad of persistent
deficits that include “impairment in social communication and interaction, and restricted and

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AUTISM AND PLANNING THE FUTURE
repetitive behaviour patterns, interests, or activities” (American Psychiatric Association,
2013, p. 53). Research reveals that one in 68 children suffers from an ASD (Baio, 2014) and
it seems to be four to five times more common in males than in females (Watt & Wagner,
2013). The Canadian statistics observe that ASD “has increased over 100% in the last 10
years” becoming the fastest growing and most commonly diagnosed neurological disorder
(Autism Speaks Canada, 2017, para. 2).
Families with an ASD member face many challenges that frequently require supports
(Smock & Turns, 2016). The Government of British Columbia (BC) provides individualized
funding directly to families to subsidize eligible private interventions (Volden, Duku,
Shepherd, Ceorgiades, Bennett, Rezze, & ... Elsabbagh, 2015). Families can use funding
towards eligible intervention services (behaviour consultants/analysts, speech-language
pathologists, occupational therapists, and physical therapists) that best suit their child's needs
and for their family needs (family counseling/therapy). According to a Ministry for Children
and Family Development (MCFD) statement “currently, BC provides funding to over 13,291
children and youth diagnosed with ASD and their families” (MCFD, 2017). Also, families
with an ASD member may receive information, support, and referral services through Autism
Information Services BC (AIS BC). It is critical that the broad range of professionals and
services are educated and can provide support with an understanding of the worries and
barriers faced by parents in planning the future of their child with ASD.
There is a growing body of research about family planning in families with children
with ASD (Angell & Solomon, 2014; Carter, Austin & Trainor, 2012; Hewitt et al., 2010;
Navot, Jorgenson, Vander Stoep, Toth, & Webb, 2016; Orsmond, Shattuck, Cooper, Sterzing,
& Anderson, 2013; Singh, 2016). However, research that explores the barriers and worries
faced by parents while trying to plan the future of their child with autism is sparse.
Through this research, I chose to explore social work theories in understanding

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disability through the Human Rights approach and Medical versus the Social Model,
highlighting Young’s (2000) Model of Oppression. Also, I chose to write about SolutionFocused Brief Therapy (SFBT) and Mindfulness Therapy because these approaches align
when working with families that have an ASD member. Both therapies may help parents of
children with ASD to cultivate nonjudgmental acceptance of their ASD, which is a chronic
and pervasive disorder (Da Paz & Wallander, 2017).
My research question was, “How do parents of an ASD child, and those professionals
supporting these parents, plan the future of their child?”. Two major themes emerged from
my study: first, parents’ anxiety about the future of their children with ASD and second,
barriers faced by parents in planning the future of their child with autism.
It has been challenging for me to speak about a subject which I have not directly
experienced; however, it has a familial connection to me because my nephew was diagnosed
with autism in 2010. While I am writing about this subject I find myself in a dual role that is
both professional and personal. The professional role guides me in identifying the parents’
concerns and the personal role is leading me to understand more their worries. This research
has impacted my own personal views and values that guide me to better understand the
systems I am attempting to navigate as a professional.
Literature Review
In recent years, there has been growing international concern about autism, in terms
of diagnosis and causes of autism, as well as in terms of public policies and strategies. In
British Columbia, increases in the rates of ASD have resulted in a substantial increase in
autism awareness and some increases in service provision (MCFD, 2017). The Ministry of
Children and Family Development (MCFD) provides funding for families towards eligible
intervention services and the Ministry of Education provides virtually all school funding in
the province (MCFD, 2017).

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AUTISM AND PLANNING THE FUTURE
I will explore what is known in the literature about historical perspectives in autism,
current perspectives in autism, disability and stigma, and parental concerns and struggles
while trying to plan the future of their child with autism.
Autism: Historical Perspectives
In 1911, Eugen Bleuler (2005) introduced the term autism and defined it as the
“shutdown of reality and […] predominance of inner life” (p. 109) considering this disorder a
secondary symptom of schizophrenia. Bleuler used the term autism to designate the loss of
contact with reality, which results in difficulty communicating with others. In earlier thinking
about autism, the condition was seen as a disorder of the self, manifested by a total refolding
of one’s own psychic universe and by non-critical thinking (Noel et. al., 2017), focused on
subjectivism and detachment of reality, dominated by reverie and fantasy (Hollin & Pilnick,
2015).
Later, in 1943, Leo Kanner published a study describing eleven young patients who
seemed to live in a personal world, ignoring others, even their own parents (Grollier, Leblanc,
& Michel, 2016). Based on the patients brought to his clinic, Kanner estimated that autism is
very rare. He classified autism as a form of infantile psychosis caused by cold, unaffectionate
parents (Grollier, Leblanc, & Michel, 2016). Although the initial designation has revealed
that infantile autism is observed in childhood, it is now clear that autism is seen as a lifelong
condition whose type and severity change over time with the development of the individual
(Bal, Kim, Cheong, & Lord, 2015). Autism was something shameful and families were
stigmatized, with feelings of embarrassment about disability and mental health issues (Angell
& Solomon, 2014).
In 1944, Dr. Hans Asperger described children with learning disabilities from his
clinic as having "a lack of empathy, little ability to form friendships, one-sided conversation,

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AUTISM AND PLANNING THE FUTURE
intense absorption in a special interest, and clumsy movements" (Dodd, 2004, p. 7). Instead
of holding parents responsible for autism, Asperger classified it as a life-long, polygenetic
disability that requires compassion and forms of support and accommodation throughout life
(Badone, Nicholas, Roberts, & Kien, 2016). Asperger saw autism as a diverse spectrum that
includes an amazing range of talent and disability and he called these children “little
professors” (as cited in Badone, Nicholas, Roberts, & Kien, 2016).
Autism spectrum disorder is a topical issue throughout the world due to the increase
in frequency and widespread presence. Worldwide, around 1 -2 % of children suffer from
this condition (Christensen, Baio, Van Naarden Braun, Bilder, Charles, Constantino, & ...
Yeargin-Allsopp, 2016), and the statistics are worrying, with the prevalence of the disease
rising by 10-17% annually in recent years (Nicholas et. al., 2008, p. 135). ASD appears in
every ethnic and socioeconomic group (Hahler & Elsabbagh, 2015).
The exact causes of ASD are unknown and one of the reasons why it is difficult to
identify the causes is because the symptoms of autism spectrum disorders vary quite a lot
from one individual to another (Barker & Galardi, 2015). However, it is believed that several
complex genetic and environmental factors are involved in the occurrence of autism.
Numerous environmental factors have been evoked as the cause of the autism over the time,
most of them being associated with complications during pregnancy and/or childbirth
(Nuttall, 2017) and some being associated with children being born too early, too small,
and/or by Cesarean delivery (Annals of Epidemiology, 2014). Other at-risk factors were
reported as pre-or post-birth exposure to drugs, infections, birth defects, epidural
administration, maternal age at first birth, and placental anomalies (Kuzniewicz, Wi, Qian,
Walsh, Armstrong, & Croen, 2014), without clear evidence. Likewise, epilepsy, depression,
and mother’s anxiety have also been mentioned in the etiology of autism (Crea, Dissanayake,
& Hudry, 2016).

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AUTISM AND PLANNING THE FUTURE
Autism: Current Perspectives
Historically the terms “disability” and “disabled people” are the most endorsed and
used terms by disability rights activists, theorists, advocates, and other professionals to refer
to people with disabilities (Dunn & Andrews, 2015). In addition to the language of disability,
we, as professionals, witness how society excludes those that are different. Disability can be
viewed as a socially constructed identity and society's solutions are primarily aimed at
physically and mentally ‘curing’ the individual of disability (Zhang & Haller, 2013).
About 15 percent of the world’s population lives with disabilities; in Canada, it is
estimated that "3.8 million people over the age of 15 have a disability, representing
approximately 14 percent of the total Canadian population" (Hick & Stokes, 2016, p. 407).
Therefore, disability debates have taken into account many approaches and, here, I will speak
about the human rights model. Together with the definition of human rights, I will discuss
how Canada sustains and supports people living with disabilities through legislation.
Human Rights “define what we are all entitled to a life of equality, dignity, respect,
and a life free from discrimination" (What Are Human Rights?, 2017, para. 2). Human rights
are protected in Canada by provincial, territorial, federal, and international laws. The
Canadian Human Rights Act and the Canadian Charter of Rights and Freedoms are the main
acts in effect regarding human rights and are implemented at the provincial and territorial
levels through legislation (Tunnicliffe, 2014).
The Canadian Human Rights Act was approved by the Parliament of Canada in 1977.
This Act protects Canadians by ensuring equal opportunity for individuals who may be
victims of discriminatory practices when they are employed by or receive services from
public or private institutions and companies. Furthermore, this Act created two mechanisms
for investigating claims of discrimination, the Canadian Human Rights Commission (CHRC),

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AUTISM AND PLANNING THE FUTURE
and the Canadian Human Rights Tribunal. Despite all these efforts, people with disabilities
still, suffer discrimination and unequal opportunities. In 2016, 60% of all discrimination
complaints received by CHRC were related to disability (The Canadian Human Rights
Commission’s 2016 Annual Report to Parliament, 2017).
The Canadian Charter of Rights and Freedoms is a part of the Canadian Constitution
and incorporates laws and basic rules on the functioning of the country. In 1982, Canada was
one of the very first countries in the world to incorporate equality provisions for people with
disabilities directly in its Constitution (Hick & Stokes, 2016). Section 15 (1) of the Charter
recognizes Canadian citizens, permanent residents and newcomers equal right “under the law
and has the right to the equal protection and equal benefit of the law without discrimination
and, in particular, without discrimination based on race, national or ethnic origin, colour,
religion, sex, age or mental or physical disability” (Heritage, 2017, p. 3). This recognition
ensures equal treatment before and under the law for every person.
At the international level, Canada supports the protection and promotion of rights for
people with disabilities through the United Nation Convention on the Rights of Persons with
Disabilities (CRPD). The purpose of the CRPD is “to promote, protect, and ensure the full
and equal enjoyment of all human rights and fundamental freedoms by all persons with
disabilities, and to promote respect for their inherent dignity” (Hoffman, Sritharan, & Tejpar,
2016, p.3). Canada approved the UN CRPD in 2010, after consultations with disability
members of provinces and territories, and Aboriginal self-government (What Are Human
Rights?, 2017).
The main objective of the Convention on the Rights of Persons with Disabilities is to
protect the rights to equality and non-discrimination of persons with disabilities through the
human rights legislation. The Convention recognizes and reaffirms some specific humans
rights such as right to life (article 10), equal recognition before the law (article 12), access to

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AUTISM AND PLANNING THE FUTURE
justice (article 13), liberty and security of person (article 14); in addition, it states that parties
must respect and promote the rights recognized in The Convention while providing strategies
to guarantee the right to life and health, for people with disabilities (Pozón, 2016).
The Rights Model of disability is important to this research for several reasons. First,
it helps establish children with autism as equal participants where they feel valued, respected
and most of all not-judged. Second, it reflects the social work ethic of integrity and respect to
ensure that the clients' voices are heard, and their need and interests are met. A desire of
parents of children with disabilities is to have their children seen as equal participants in
society and as adults to have the freedom to make their own choices (Broach, 2016).
Medical Model versus Social Construction Model
In the Medical Model, disability is understood to be an individual problem and “is
considered to be a result of impairment of body functions and structures” (Haegele & Hodge,
2016, p. 195). For example, if a person has a visual, mobility or hearing disability, their
inability to see, walk or hear, is perceived as his or her personal disability and has become a
product of cultural rules about what bodies should be or do (Dunn & Andrews, 2015). The
medical model of disability focus on ‘impairments’ of the body; this model can be viewed as
disempowering as it focuses on the need to ‘fix’ the individual (Haegele & Hodge, 2016).
The medical model approach is based on a belief that the difficulties associated with the
disability should be borne wholly by the disabled person (Beaudry, 2016). The implication of
this approach is that people with disabilities should make an extra effort to ensure that they
do not inconvenience anyone else.
Historically, the Medical Model determined the systematic exclusion of people with
disabilities from society and forced institutionalization of persons with psychosocial
disabilities (Hoffman, Sritharan, & Tejpar, 2016). The establishment of ‘the asylum’ was

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AUTISM AND PLANNING THE FUTURE
meant to be one instrument for this vision (Chow & Priebe, 2013). The original intention of
asylum was "the idea of respite, or sanctuary of a place where patients could escape from the
pressures and corrupting influences that were seen as endemic to life in the cities" (Davis,
2014, p. 194). Removing mentally ill people from society and placing them in asylums had
the effect of decreasing the discomfort and stigma experienced by some family members, but
the experience ultimately was far worse for those being sent away and for many of their
families (Davis, 2014). Later, institutional care and treatment of people with mental health
problems shifted into full-service hospitals for the formal study and treatment for persons
with disabilities (Chow & Priebe, 2013).
Many have argued that the medical model increases stigma for those who are disabled
(Haegele & Hodge, 2016). The experience of stigma associated with mental health problems
can lead to feelings of shame and hesitation in accessing support. This often might be
combined with a lack of awareness of the law and of available services and support (Nayar,
Stangl, De Zalduondo, & Brady, 2014), which can lead to resistance to help others or to seek
help for themselves.
In contrast with the Disability Rights Model which guarantees the right to life and
health, the Medical Model prioritizes rights to a much lesser degree; as a result, people with
disabilities have to advocate for their own rights. The question becomes, how can people
with autism self-advocate for their rights when they may not be able to clearly communicate
their needs? Being able to voice your concerns and being heard is empowering and
validating. Nobel (2004) speaks about the “celebration of differences and acknowledging the
importance of a socially inclusive practice dialogue. This concern for ‘otherness’ accepts that
all individuals and groups have a right to speak for themselves, in their own voice, and to
have that voice accepted as authentic and legitimate” (p. 296). In Nobel's (2004) vision,
speaking or hearing your "voice" does not have to occur in a traditional way. In my

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experience, as a Special Education Assistant, I met a few students who made themselves
heard through art or drama. Through this experience, I learned how to adjust traditional
training and eliminate the language barrier. It is unfair the people with autism may not have a
place to engage in this act ‘being heard’. The power of our language and "the being heard
and having one’s story understood" is closely aligned with the feminist model (Gregory &
Holloway, 2005, p. 39).
The Social Model arose in response to the critique of the Medical Model of Disability.
The Social Model centers on systematic oppression and discrimination against disabled
people, and the negative social attitudes encountered by disabled people throughout their
everyday lives (Dunn & Andrews, 2015).
Disability and Stigma
At the social level, people with disabilities face stigma. Corrigan (2000) defines
stigma as a set of harmful “attitudes, stereotypes, discriminatory behaviours and biased social
structures" (p. 49) sustained by the majority about the disability. He refers to three types of
stigma: structural stigma, public stigma, and stigma by association. A structural stigma refers
to imbalance and injustice seen in a social institution. Public stigma focuses on the attitudes
of the general population toward the stigmatized person. Public stigma refers to the
cognitive, affective, and behavioural reactions of individuals from the general public towards
the stigmatized individual (Pryor & Reeder, 2011).
Stigma by association refers to stigma experienced by family members (Werner &
Shulman, 2015). For parents who have a child with a disability, stigma has a negative impact
and can result in fewer outings with the child, less contact with friends and relatives, and
increased privacy about their child’s diagnosis (Werner & Shulman, 2015). There is also selfstigma, and this refers to the way in which the individual internalizes society’s negative views

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AUTISM AND PLANNING THE FUTURE
toward themselves (Ali, King, Strydom, & Hassiotis, 2016). Experiences of self-stigma
produce in people with disabilities and in their family member’s negative emotions, who
experience low self-esteem or self-worth. As a result, they may tend to avoid social
relationships (Ali, King, Strydom, & Hassiotis, 2016). Therefore, knowing the impact of the
stigma and the social construction of disability at the individual and social level will be
helpful for a better understanding of disability.
Along with stigma, it is important to explore the three levels of oppression: personal,
cultural, and structural (Ugiagbe & Eweka, 2014). Ugiagbe and Eweka (2014) explain that at
the personal level, oppression contains the thoughts, attitudes, and behaviours that portray a
negative pre-judgment and it is based on stereotypes. Oppression at the cultural level occurs
when the dominant culture is defined as the norm, which can lead to individualism and
cultural imperialism. According to Ugiagbe and Eweka (2014) structural oppression refers to
the ways that social institutions, laws, policies, social processes and practices, and economic
and political systems all work together to the detriment of people with disabilities. The
experience of oppression faced by parents of children with autism can lead to feelings of
shame and hesitation in accessing or facing exclusion (Stein et al., 2011).
Young (1990) drew attention to the disadvantages of people with disabilities because
of “everyday practices of a well-intentioned liberal society” (p. 41). Therefore, it is
imperative to be aware of societal attitudes and reactions towards people with disabilities. As
helping professionals, social workers can help parents who are struggling to come to terms
with the future of their child with autism by gaining more insight and understanding of
challenges of this disability.
Parental Concerns and Struggles
The literature acknowledges that parenting a child with ASD is challenging. The

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AUTISM AND PLANNING THE FUTURE
diagnosis of a disability has a significant impact on the well-being of the individual’s
development and entire family as well (Schor, 2003). ASD is a permanent disability with
continuing challenges and parents of children with ASD experience both short and long-term
concerns and struggles.
Parents of children with disabilities struggle with an increased risk for acute and
chronic stress compared to parents of children without disabilities (Davis & Carter, 2008).
However, the stress of having a family member with a lifelong disability can also negatively
influence the finances of the family in several ways. For example, the family can be
impacted in terms of the labor market, uncertainty about eligibility for disability funds, and
the financial pressure to pay for all the therapies and services they need (Cidav, Marcus, &
Mandell, 2012). In addition, higher rates of hospital visits, appointments with specialists, and
psychosocial and psychoeducational interventions impact the families’ time and financial
resources (Accurso, Garland, Haine-Schlagel, Brookman-Frazee, & Baker-Ericzén, 2015;
Vanegas & Abdelrahim, 2016).
Recent studies show that families of children with autism endure difficulties with
finances and employment because of their children’s numerous needed services (Saunders,
Tilford, Fussell, Schulz, Casey, & Kuo, 2015). Children with autism require suitable
psychosocial and psychoeducational interventions that will allow them to develop self-care
abilities and skills for independent living and social inclusion (Adak & Halder, 2017).
Therefore, some parents are forced to leave their job, decrease work hours, or arrange to work
from home (Cidav, Marcus, & Mandell, 2012), in order to help their children and attend to all
these services.
Families with a member with autism can be impacted by uncertainty about eligibility
for disability funds. In BC, children thought to have autism are referred to the BC Autism
Assessment Network (BCAAN) for an assessment by a pediatrician, psychiatrist, and/or a

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AUTISM AND PLANNING THE FUTURE
psychologist (Ministry of Children and Family Development, 2017). This assessment is
covered by provincial medical services plan, but the wait time varies from region to region
and it is common to wait for a year to receive a diagnosis. It is possible for parents to pay for
autism assessments privately, but these vary in quality and may not meet the standards
required by the MCFD. Children under age six diagnosed with ASD receive funding up to
$22,000 annually and for children aged six to eighteen families can access up to $6,000
annually from the AIS BC of the MCFD (MCFD, 2017).
One of the greatest concerns of parents’ s regarding the future of their children with
ASD is identifying caregivers who will provide caregiving, advocacy, and support to their
children when they are no longer able to do so (Ooi, Ong, Jacob, & Khan, 2016). This is an
understandable concern taking into account the cycle of life; parents realize that their child
may not have an independent life, may not marry, or work without support.
Despite these concerns, many parents do not make long-term plans with their children
with disabilities (Robert, Leblanc, & Boyer, 2015). When parents plan, they often focus on
short-term choices and objectives, but without earlier planning, future adults with ASD may
be placed in inappropriate care settings or, given waitlists and wait times, or may not have
access to care facilities at all. A number of researchers emphasized that these parents
experience anxiety, fear, and stress related to lack of information about planning the future for
their children (Singh, 2016).
Social Workers Role in Supporting Family with an ASD Member
The family constitutes a unit within society and is often the central object of analysis
and reflection of several scientific disciplines, along with the social work profession (Rahul,
2013). In addition to the myriad of challenges faced by families, many experience a period of
grieving when they find out the news of the ASD diagnosis (Navot et al., 2016). There are

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many approaches, therapies, and interventions for improving the lives of families with ASD
members and for improving the lives of people with autism.
Solution-focused brief therapy.
Solution-Focused Brief Therapy (SFBT) focuses on what people are doing, and
“SFBT therapists are trained to be non-judgmental, egalitarian, and focused on expanding,
rather than limiting options” (Paul, 2008). SFBT is an often-used approach for families that
have children with intellectual disabilities because it aims to help parents find tools they can
use immediately to manage and cope with challenges (Zhang, Yan, Du, & Liu, 2014).
Although parents of children with ASD may already have the skills to create change in their
lives and their children’s lives, they often need help identifying and developing social,
behavioural, and communication skills. Through SFBT, practitioners work to help the
parents to clarify their goals and cope with their circumstances to some degree (Smock &
Turns, 2016).
SFBT techniques are often the chosen method for creating behavioral change and
focus on solutions in the process to help clients set goals for their problems (Kim & Franklin,
2015). Essential SFBT techniques include compliments, miracle questions, scaling questions,
reframing problems, hypothetical future etc. (Smock & Turns, 2016). Family members are
encouraged to describe the goal progression towards therapy in small specific stages of
behaviour; these goals being created by the therapist and client working together in a
collaborative working relationship (Kim & Franklin, 2015).
One core process of SFBT is “The Miracle Question,” which asks clients to shift their
thinking and feelings they have and describe a future where the problem no longer exists
(Kim & Franklin, 2015). Typically, the miracle question asks, “Suppose that one night, while
you were asleep, there was a miracle and this problem was solved. How would you know?

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What would be different?” (de Shazer, 1987, p. 5). By asking the miracle question, the
therapist asks clients to describe differences that would occur when problems were solved
and to help understand what a solution may look like (Brockman et al., 2016). For families
with a member with autism, this type of question may encourage them to identify how they
have managed the situation in the past and urges them to track the behaviours they have
found useful in their situation (de Shazer & Molnar, 1984).
Coping is another important factor to consider when working with ASD families.
Parents of children with autism need a wide range of coping strategies and multiple coping
mechanisms necessary to meet their children's needs, as well as the perception needed to
select and put into practice suitable strategies for the challenges they may encounter (Hall,
2012). Positive reframing is a useful coping strategy for ASD families (Hastings et al.,
2005). The social worker asks questions about coping in order to help the clients
acknowledge the difficulties and helps to provide assistance (Smock & Turns, 2016).
Following the miracle question, coping and scaling questions, social workers will
typically invite families with a member with autism to become aware of their problem in
terms of difficulty. Again, the focus is not on doing interventions but on the process of
listening, selecting, and building (Smock & Turns, 2016). This involves using a scale from 1
to 10 in which each number represents a rating of the problem (one being the worst a
situation could be and ten being the best). The social worker can explore where things would
need to be for them to feel that the aims of therapy have been met (Brockman, Hussain,
Sanchez, & Turns, 2016).
This approach emphasizes parents’ strengths and helps them construct future solutions
rather than solve past problems (Trepper, 2012). Likewise, “the heart of the SFBT approach
lies in the importance of language, the interactional effects that are occurring in dialogue”
(Smock & Turns, 2016), thus making SFBT ideal for families with a member with autism.

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Mindfulness therapy.
Mindfulness therapy might be an approach for families with an ASD member because
it aims to cultivate care and compassion so that people can be more responsive to stress and
sad moods (Hwang et al., 2015). Kabat-Zinn (2011) has defined mindfulness as “a cognitive
skill that involves present-focused attention that is intentional, nonjudgmental, and accepting”
(as cited in Goldberg, Del Re, Hoyt, & Davis, 2014, p. 491). The goals of mindfulness
include “paying attention to our actions, being present and engaging in life in a purposeful
manner” (Lash, 2004, p. 20). Moreover, mindfulness intervention may help parents to
promote positive outcomes (Bluth, Roberson, Billen, & Sams, 2013) such as reduced stress,
increased self-compassion, greater awareness, increased capacity for forgiveness and
empathy, and the addition of elevated personal growth (Benn, Akiva, Arel, & Roeser, 2012, p.
1482-1483).
Additionally, mindfulness has been defined as consisting of five mindfulness skills:
“acting with awareness,” “observing,” “describing,” “non-reactivity to inner experience,” and
“nonjudging of inner experience” (Carmody & Baer, 2008, p. 24). Through mindfulness
techniques, families with an ASD member are trained to be aware of their reactions, thoughts,
and feelings instead of being overwhelmed by them. Parental calm, a potential outcome of
mindfulness, is also very important for children with ASD because they react best when their
habitation is predictable most of the time (de Bruin, Blom, Smit, van Steensel, & Bögels,
2015).
Mindfulness techniques teach parents to slow down their reactions and be aware of
their intention prior to taking actions (de Bruin et al., 2015, p. 907). Children with ASD
function best when there is consistency in their environment and their social climate is
predictable and not overloaded with (emotional) changes (Memari, Mirfazeli, Kordi,
Shayestehfar, Moshayedi, & Mansournia, 2017). Therefore, mindfulness techniques may

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help parents to keep their calm and pay attention to their child, to cultivate acceptance and to
be flexible and responsive in their interactions with their children. Furthermore, the parents
of children with ASD start to develop a nonjudgmental acceptance of ASD, which is a
chronic and pervasive disorder (de Bruin et al., 2014).
The characteristics of mindfulness-based interventions have clear relevance for
families with an ASD member with a variety of issues and have been the focus of recent
treatment research (Cachia, Anderson, & Moore, 2016). A recent study with parents of
children with ASD found that the stress level of parents who had the chance to use
mindfulness intervention decreased comparable to parents who used parenting skills
intervention (Ferraioli & Harris, 2013). The results of a study that investigated the impact of
a mindfulness intervention on emotional well-being outcomes of parents and educators of
children with disabilities showed that the mindfulness therapy had a mediating effect (Benn
et al., 2012). This was reflected in improved well-being outcomes, including stress, anxiety,
depression, personal growth, emotional regulation, self-compassion, quality of parent–child
interaction, forgiveness, and empathetic concern (Benn et al., 2012).
Social workers’ calling.
The social worker can play a broad role in supporting parents of a child with autism to
plan the future. As professionals, social workers equip the parents by using a strengths-based
and empowerment perspective focused on capabilities, capacities, and opportunities (Strunk,
Leisen, & Schubert, 2017). In order to plan the future, families often need help through the
diagnostic process, resource location and linkage, advocacy, and policy advocacy specific to
ASD (Mogro-Wilson, Davidson, & Bruder, 2014, p. 63).
The literature review emphasized the impact of an ASD diagnosis on the entire family
and showed the importance of support for the family through the diagnostic process. From

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the moment parents notice something unusual with their child until the diagnosis is received,
the social worker's role is essential in planning future steps and helping families to find
appropriate autism services, doctors, schools, and therapists (Foster, 2015). At the same time,
parents of children with ASD experience a range of emotions (grief, denial, loneliness),
experience an increased risk of acute and chronic stress, and face stigma regarding their
child’s subsequent challenges (Davis & Carter, 2008; Vallotton et al., 2016).
The social workers, are called to help the parents to navigate through the system and
to advocate for their children needs. Children suspected of having ASD are referred to the
BCAAN and after they receive a diagnosis, the MCFD gives the funding directly to parents
(MCFD, 2017). Along with funding, in BC, children with ASD may also be eligible for the
Infant Development Program which is a family-centered, home based, consultative program
that serves children from birth to three years of age (Infant Development, 2018). In addition,
the Supported Child Development Program provides support for child care staff, families, and
their children, up to 12 years of age, in licensed daycare, preschool or out of school care
programs (Supported Child Development, 2018). At age 18, the ASD funding from the BC
MCFD ends. Ministry of Social Development & Poverty Reduction supports adults with ASD
to qualify for services from Community Living BC (CLBC) and other community agencies.
In order to qualify for CLBC services, adults with developmental disabilities must
demonstrate “significantly impaired intellectual functioning, significantly impaired adaptive
functioning, [and] these limitations must have started before age 18” (CLBC, 2018).
Professionals working with clients with autism have an obligation to eliminate
stereotypes about autism (Foster, 2015). These stereotypes can be debunked by providing
information about the lives of these children, their capabilities, and achievements. There are
many examples about the capabilities in disability: for example, people with autism may be
“suited to concrete and pragmatic pursuits like engineering, physics, and mathematics”

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(Quirici, 2015, p. 72).
On the other hand, as social workers, we can highlight the feelings that children with
autism and their parents have when they are discriminated or marginalized because of the
stereotypes, prejudices or stigmas that apply to them by neurotypical members of a society.
The experience of rejection is very painful; - to be rejected because of what you are, to have
the feeling that people avoid you because you have a certain disability contributes greatly to
the individual suffering (Peers, Spencer-Cavaliere, & Eales, 2014).
In communicating with parents of children with autism, social workers need to be
attentive to language and attitude. The language we use and hear influences how these
parents see themselves and their children. It is necessary to avoid words and expressions that
discriminate and stigmatize. Negative language about disabilities and deficiencies has a
strong impact on the person (Wilson & Scior, 2015). The language used by social workers
must respect the dignity, rights, and diversity of people with disabilities.
Theoretical Framework
Parenting a child with a disability can be a very challenging, exhausting, and
overwhelming effort. As presented in the literature review, parents of children with
disabilities report feeling stressed, misunderstood regarding their parenting style, and
unsupported by their community. The statement “Parents as experts” might seem unrealistic
but this is the reality for parents with a child with autism. It requires parents to make the
right decision for their child at the right time because this decision will affect their child’s
whole life (Russell & McCloskey, 2016). Given the role and responsibilities of parents, the
theoretical framework for this research outline two themes. First, the theoretical framework
explores a human rights model shaped my understanding of disability. Secondly, I illustrate
how anti-oppressive social work teaches me to advocate for children with autism. This
theoretical framework guides me in my goal of becoming an activist social worker for the

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rights of people with disabilities, helping their voice and their parents’ voices to be heard.
Human Rights Model
A theoretical framework that centers on the Human Rights Model helped shape my
research because it gave me a greater understanding of the worries and barriers faced by
parents of children with autism. Historically, persons with disabilities have been treated as
recipients of welfare, health, and charity programs rather than individuals deserving of equal
legal rights (Hoffman, Sritharan, & Tejpar, 2016). The Human Rights Model of Disability
advocates for a cultural change in relation to social attitudes and practices towards disability
and people with disabilities. People with disabilities are no longer perceived as objects of
charity, "requiring" medical treatment or social protection, but are persons with rights who
have the ability to make decisions and to control their lives (Morrissey, 2012). As a result,
society is committed to creating the right conditions for equal participation of people with
disabilities in community life.
Human rights are rights that everybody has by virtue of being human (Schroeder,
2012), regardless of gender, race, nationality, etc. These rights are separate from the rights
people have by law. That is why fundamental human rights are inalienable and cannot be
withdrawn or restricted (Morrissey, 2012). In principle, the idea of human rights and respect
for people with disabilities is understood as an individual/national level, but also as an
individual/individual relationship (Dumais & Archambault, 2015).
Inclusion of people with disabilities are examples of how to respect the rights of every
citizen. Fundamental principles that have changed quality of life, education, and integration
of people with disabilities in social life are based on human rights. In Canada, respect for the
rights and dignity of persons with disabilities, is enshrined in the Canadian Charter of Rights
and Freedoms, which proclaims that all human beings are born free and equal in dignity and

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rights.
A Human Rights Model helps point to the "lack of effective national disability
policies that are needed to lay the foundations for the implementation of the CRPD; the
discrepancy between national politics and local community practice; and the lack of political
will among policy-makers for full implementation" (Hoffman, Sritharan, & Tejpar, 2016, p.
4). Furthermore, the lack of opportunity for people with disabilities to take on leadership
roles, even if they are an authority based on their own experiences was highlighted through
the CRPD grants (Carter, Swedeen, Walter, Moss, & Hsin, 2011). The CRPD principles
advocate an equal participation of persons with disabilities in the conduct of public affairs,
without discrimination (article 29).
A Human Rights Model also focuses on the obstacles facing people with disabilities
in accessing to appropriate health care, support, and social services that they require. As
Hoffman, Sritharan, and Tejpar (2016) state, "many are excluded from their community life,
face abject levels of intolerance, and are denied the right to marry and have children" (p. 2).
This oppression raises many questions about the role that human rights legislation can play.
Young’s Model of Oppression
Young (2000) helps point to the oppression experienced by persons with disabilities in
society and helps highlight “structural oppression”. In the context of interactions between
autistic and non-autistic people, Young (2000) affirms that all oppressed people suffer some
inhibition of their ability to develop and exercise their needs, thoughts, and feelings, and
argues that “we cannot eliminate this structural oppression by getting rid of the rules or
making some new laws, because oppressions are systematically reproduced in major
economic, political, and structural institutions” (p. 41).
Young (2000) defines oppression through five faces of oppression such as

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exploitation, marginalization, powerlessness, cultural imperialism, and violence. In Young's
(2000) vision, marginalization is the most dangerous type of oppression. She explains that
entire groups of people can be excluded from participation in a social activity, culture, or
environment. Nicholson and Cooper (2013) point out that here are two primary components
of social isolation: objective isolation and subjective isolation. Objective isolation is
determined by the size of an individual’s social network, while subjective isolation results
from individuals’ perceptions of the quality of their relationships with other people
(Matthews, Danese, Wertz, Odgers, Ambler, Moffitt, & Arseneault, 2016). As mentioned
earlier, many families stop socializing when they discover they have a child with special
needs, out of fear of how they and their child will be received by the public and those around
them. People with autism are marginalized in society; they are perceived as deficient in their
“social being, incapable of full socialization and personhood" (Milton, 2016, p. 1405).
Using an anti-oppressive theoretical framework focused my attention on oppression
faced by people with disabilities and how my role and interactions with those that I support
has the ability to empower or oppress them. These realities have motivated me to explore
disability as a socially constructed category that has historical, cultural, political, and
economic implications for social life.
Design and Methodology
The research question for this study was “How do parents of an ASD child, and those
professionals supporting these parents, plan the future of their child?.” The study used a
qualitative design with a semi-structured interview and open-ended questions (Dudley, 2011,
p. 249-250). This design was chosen because it offered more flexibility and space for
participants to answer in as much detail as they liked. To increase confidentiality, all
interviews were conducted on an individual basis.

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Recruitment
Recruitment began once approval had been obtained from the University of the Fraser
Valley’s Human Research Ethics Board on March 07, 2017 (see Appendix A). In order to be
eligible to participate in the study, participants had to meet the following criteria: each
participant had to have a child diagnosed with autism or work with a child with autism as a
specialist such as social worker, teacher, special education assistant, occupational therapist, or
behavioural consultant. Participants were given a $10 coffee card to thank them for
participating in the study.
This research project used the snowball sampling method (Dudley, 2011, p. 146) to
recruit participants. Given that I am personally and professionally connected to people who
meet the criteria to participate in my research, I sent information about this research project to
my personal and professional network. Potential participants were provided with a
Recruitment Letter (see Appendix B) which detailed the criteria for eligibility to participate,
and the process of the study. Four participants responded to the invitation to participate in the
study. Between March 24, 2017 and October 6, 2017, I conducted individual interviews with
each participant. Three participants were interviewed face-to-face and one participant was
interviewed by telephone.
Data Collection and Analysis
Participants were provided with an informed consent form to sign (see Appendix C)
that described the purpose of the study and explained that their responses would remain
confidential. After obtaining each participant’s written consent, individual interviews
between the participants and I were conducted. The interviews were audio recorded and
transcribed by myself in order to analyze data for similarities, comparisons, and intersecting
themes, patterns, and concepts (Dudley, 2011, p. 258-261). A series of five to eight open-

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ended questions (see Appendix D) were asked in a semi-structured interview and each
interview was approximately 30-40 minutes in duration. The purpose of using open-ended
questions was to allow for flexibility in the interviews and to encourage in-depth and
descriptive responses. All data is stored in a password protected file on a personal computer
and all raw data will be destroyed on June 1st, 2018.
The interview questions focused on the research question and questions asked of
parents were different from those for professionals, and both sets of questions focused on the
parents’ experiences. Through the interview process, I wanted to explore parents’ worries,
barriers they may face, and steps that they are taking to plan the future of their child with
autism.
The interviews were recorded with a recording application on my phone. The phone
was password protected so the data was kept secure. Following interviews with participants,
I transferred interview recordings onto a password-protected computer that was also
protected by a password, and promptly deleted all interview data from my phone. Each
participant was given a pseudonym that was attached to their data and was used through the
data analysis process. The transcripts from the interview will be stored on the computer for
the duration of the study.
Ethical Considerations
Approval was obtained from the Human Research Ethics Board of the University of
the Fraser Valley on March 7th, 2017. Several steps were taken to protect the confidentiality
of participants. Interviews were recorded on a password protected phone, then transcribed
and saved on a password protected computer. I was the only one who transcribed the
interviews. Each participant was given a pseudonym at the time of transcription; the
pseudonym will be used when a participant is referred to in the findings.

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I handed out the “Recruitment Letter” to the participants at their first meeting and
used a number of steps to protect the participants’ confidentiality. Further, the email and
consent form explicitly stated that each participant’s participation in the study would be kept
strictly confidential.
Throughout this research, I had to be aware of participants’ emotional reactions, given
that they were asked to share sensitive information regarding their child, client, or student
with autism. Prior to the interview, participants were informed that they did not need to
answer questions that made them feel uncomfortable.
Interview participants were also informed that they could end the interview and
withdraw from the study at any point by simply notifying me. All information is also
included in the “Informed Consent Letter” that are, participants signed. None of the
participants demonstrated significant distress during the interview. Furthermore, all
participants participated for the duration of the interview and answered all questions.
Findings
Four participants were interviewed for this study. Two participants were parents with
an ASD child and two were professionals working with children with ASD. One of the two
parents was male and both professionals were female. Three interviews were held face to
face and one interview was carried out on the phone. The two professionals interviewed were
university educated, one holds a Master Degree in Special Education, and the other has a PhD
in Philosophy, and a combined total of over 28 years of professional practice within the ASD
field between them. Both parents had a son with ASD; one son was fourteen at the time of
the interview, and the other son was nineteen years old. Pseudonyms will be used in place of
participant names.
After all of the interviews had been completed, they were analyzed for the purpose of

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identifying common themes. Two overarching themes emerged: worries of parents about the
future of their child with ASD and barriers faced by parents in planning the future of their
child with autism.
Worries of Parents About the Future of Their Child with ASD
Further analysis of the data revealed a number of worries communicated by the
parents and specialists. The participants mentioned worries such as not always having the
power to help their children, their concern related to their children’s constant need for help
and support, and their anxiety related with their children’s ability to care for themselves when
they become adults.
The parents will not always have the power to help their children.
The research participants were asked to speak about their biggest worries regarding
the future of their child with autism. Each participant spoke about the worries of parents who
are willing to help their child. Nick, the father of a teenager with autism, affirmed that:
we do talk about the far future, like what happens if we are not around or what we
have in place. If we won’t be around who is going to take care of him... That is
always the kind of stuff that you are thinking about and you worry about it.
Lucy, one of the specialists interviewed, described parents’ need for support as being
the most important. They need encouragement and support to address emotional stress from
the moment of diagnosis to the financial difficulties caused by treatments and therapies.
Autism affects all aspects of the family. While societal attitudes might reflect the belief that
parents should be a "backbone" for the child, parents also need emotional support, and, in the
case of parents with a child with a disability the support that they need is bigger (Hickman,
2006). Lucy also stated that: “As soon as the parents realize that their child has some sort of

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learning challenge that already increases their level of anxiety, just as any parents, is normal,
right? They realize that is something that is not right, their child…”.
Related to the need for emotional support is parents’ need for some respite and free
time. Nick confirms that, “After school he is picked up by one of his former Teacher
Assistants and she watches him until we get home from work and pick him up… she also
does some respite for us on weekends, a couple of times now.” The research highlights
parents' increased stress compared to parents of children without disabilities and parents of
children with other developmental disabilities (Davis & Carter, 2008; Vallotton et al., 2016).
Participants also spoke about the impact of not seeing their children reach socially
expected “milestones”. Cheryl, as a parent, stated that: “My son is nineteen years old and he
needs rides daily from home to the practicum place…. He is going by himself most of the
time to the places that he knows. He has to have a job, because he is part of this society...”.
Maria, as a professional, saw parents’ worries through the same lens and stated, "Symptoms
of autism persist throughout the whole life. So even if a child can integrate into society when
he turns 18, he needs family support, a person to help him adapt".
Parents’ concern related to their children’s constant need for help and support.
The interviewees highlighted that parents’ worries change as their children move to a
different developmental phase and that, as they age, their children will need more help and
support. Nick stated that “there are unknowns too. We don’t know how independent he will
be… It’s always hard to see or to predict where the things will end up.”
Maria, one of the professionals interviewed, explained “We know, that children with
autism is a whole spectrum so their needs are very unique and sometimes the needs can be
very different from one child with autism to the other.” She added that parents worry about
everything, about the immediate steps, about the day-by-day steps and the weekly steps, and

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“they worry regarding their children’s reactions and interactions with other kids of their age
or with others in the public”. Parents worry about transition from one thing to another, from
one context to the next: “for a lot of these kids, their anxiety comes over them so fast and
they can quickly get into panic mode or so; therefore, [how to] manage them and calm them
down are the things parents need to plan.”
Nick spoke about his child’s need for support and help to plan for the near future:
He has a behavioural interventionist who is coming once a week, so we are kind of
working on the skill set. They are doing some cooking right now, talking about being
able to use the phone, those independent skills if one day he has to use the oven or
cook something, take care of himself.
Further, he strengthens this statement by saying; “Parents that have kids without disability
don’t worry about “… ‘will your child be able to answer the phone properly or know what to
do when there is a fire in the kitchen?’”
When the child is diagnosed with autism, parents may experience strong feelings of
denial, sadness, anger, fear, or depression. These are natural emotional attitudes, but it is best
to deal them as quickly as possible and start looking for appropriate solutions for the
treatment of the child (Fernańdez-Alcántara, García-Caro, Pérez-Marfil., Hueso-Montoro,
Laynez-Rubio, & Cruz-Quintana, 2016). The parents need help to process these strong
emotions and move on in a healthy way. The parents need help to overcome them. Lucy, the
other specialist interviewed, emphasized that:
I would like to say that the parents we have now, they are very cooperative, they are
not very hands on as much as we will like them to be, but only because of their
work...if we say that their child needs a tutor, that they hear us, and they plan to
follow our advice.

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The parent’s anxiety related to their children’s ability to care for themselves
when they become adults.
The research participants expressed worries for the future of a child with ASD as
parents’ search for help. The parents have to train themselves to understand and to help their
children. Cheryl, as a parent, talked about the help that her son needs with both worry and
hope at the same time. She worries that her son will not have a good school adviser to help
him make the right decisions. She says: “I am not sure if he understands about what I am
telling him. Being a person with autism means that he understands under different strategies
of talking.” Her 19-year old son is enrolled in a customer service and cashier training
program at a local college, but “after this program is over, he does not know what he wants to
do.”
Maria, as a professional, empathized that,
lots of parents become very strong in terms of the advocacy role for their children
with autism, but in terms of the worries, they worry about the future once they will
have finished the public-school education, - what is their prospect of employment.
Some children with ASD are bright and some have very special talents, gifts and all kinds of
strengths, but this will not guarantee success in employment.
Barriers Faced by Parents While They Try to Plan the Future of their Child with
Autism
The research participants were able to identify several barriers faced by parents as
they try to plan the future, such as late diagnosis, professional language, and the funding and
resources necessary to cover the cost of therapies.
Late diagnosis.
Respondents identified late diagnosis as the barrier in planning the future of their

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child. Lucy stated that: “Early diagnosis and appropriate treatment increase the chances that
a child with autism will be able to live independently when they reach adulthood.”
Nick described the diagnosis experience for his son as “very clinical” and “a little bit
awkward”. Luckily, he and his wife come from a social work environment and that helped
them to realize early that something was wrong with their son. Their experience compelled
them to go to the doctor and ask for an assessment. Nick confirmed that:
It is one of those things that you don’t think is going to happen to you until it does.
The reaction of the diagnosis is a little bit numbing because you don’t really see what
that means at that time. It’s hard to visualize what is going to happen in the future and
the struggles that he might have.
Cheryl’s experience was different, and she explained,
When my son was 3 years old I noticed that he was different than other children in the
playground and then I …. is very hard to talk …. sorry … I decided to go to a
specialist to figure out what is the first step in helping him. When he was 4 years we
went to Sunny Hill and he was diagnosed with this disability, in that period it was
visible how he was acting like not average his age.
For Cheryl, diagnosis at the age of 4 years has made her feel that her son had lost something
important. "If I had known in advance, I would have documented and asked for specialized
help. Now he recovered a lot, but at first, it was difficult, the results have hardly been seen
because we began to start therapy later. "
Professional language.
In identifying the barriers faced by parents while they plan the future of their child
with ASD, the interviewees mentioned “professional language” as a barrier. Maria has talked
about her role as a specialist as knowing the system and helping parents navigate: “when they

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don’t necessarily speak the formal language of the system …. It’s difficult and sometimes
that’s where I see the parents need to work closer to the school and the school needs to work
closely with these parents.” She further explained by talking about the strategy she uses: “I
usually sit down with them based on the information from my observation and assessment …
to talk clearly and honestly with the parent and I need also to take the parent’s information
and validate them.” Parents are at different levels and knowing where they are at the moment
makes the process of partnership between parents, teachers, and other specialists who come
in contact with children with ASD easier. Maria stated that: “The information coming from a
professional helps them to speak the professional language because that language is validated
by their experience and when they speak for them they are able to access more support or
maybe government agency support.”
Nick stated that:
The system is always changing …and being on top of it is always hard too … because
we find that sometimes in the system there are so many things that you do not know
and then you realize that you could have help here, or you could have done this, but
nobody tells you and the system is kind of teaching in different ways.
The parents need assurance that they are doing the right thing when parenting their
child and when frustrated by changes and difficulties. Nick stated that “the system is not
individualized and not knowing the way how to access it and what to access brings
dissatisfaction and disappointment.”
Lucy further confirms the difficulties that result from professional language. She
stated that:
to help the parents, we come up with our own binders/folders in order for parents to
have a guide where they are supposed to go, what they are supposed to do, when they

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need to access their funding, these are the forms…which is actually not part of the
school’s job, that is part of the Case Worker through the Ministry but because there is
a language barrier and we know the parents more, then we feel that is our duty to help
them until they get used to doing it by themselves and getting as many resources they
need for their child.
Financial resources.
The cost of raising a child with autism typically includes an ongoing mix of special
education programs, medical care, treatment supports, and lost wages. Cheryl had to quit her
job when she found out that her son was different than other children and needed full time
support. Also, she said that her family spends “a great amount of money and time on
treatment and interventions, giving away our priorities.” In regards to her job, she said that
… at that time was the beginning of using the computers and the internet and I missed
that start. Now if I want to look for a job it will be very difficult because I don’t have
the skills to use these tools that are essential nowadays.
Families that have a member with mild disabilities such as autism are often economically
disadvantaged (Roeden, Maaskant & Curfs, 2014) because available resources are not enough
for special education.
Lucy stated that: “I think access to the resource is the first problem. ASD is a very
wide spectrum, but the funding is limited to $6,000 a year…which is not enough to pay for as
many behaviour interventionists that they will need.” Additionally, there are not enough
resources for the school because the funding that goes to the school is not enough to pay for
an SEA’s salary for one year. In evidencing the insufficiency of funding, Lucy stated that: “It
depends on the level of need, of support of the child and then the type of resources.”

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Summary of Findings
These two major themes are closely related. All of the participants involved in the
research talked about worries of parents and the barriers faced while trying to plan the future
of their child with autism. Interviewees believed in the importance of planning when families
have a child with ASD, and planning the future looks different from the parent’s perspective.
Regarding the parent’s concern, the participants mentioned worries such as not always
having the power to help their children, their concern related to their children’s constant need
for help and support, and their anxiety related with their children’s ability to care for
themselves when they become adults.
The interview participants identified several barriers faced by parents while they try to
plan the future of their child with autism, such as late diagnosis, professional language, and
the funding and resources necessary to cover the cost of therapies.
Regardless of the worries and barriers faced by parents, there is not a singular method
to plan the future; everybody’s experience is different. When planning the future of a child
with autism, the parents and the professionals have to work together in planning step by step.
They must take into account “-the student’s preferences and interests-” (Maria) and parent’s
worries. It is not a process that happens overnight; it takes time, and everybody has to be
involved.
Limitations of the Study
The small size of the sample is a limitation. With only four participants, two parents
and two specialists, the results cannot be generalized. In additional, only parents who have a
child with autism and specialists who work with a child with autism (such as psychologists
and special education educators). I chose to include specialists in the research because this is
a sensitive subject for some parents and was concerned I would not find enough parents of a

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AUTISM AND PLANNING THE FUTURE
child with autism who would be open to speaking about their experiences.
Implications
The interviews provided insight about worries and barriers faced by parents while
they try to plan the future of their child with autism. The participants involved talked about
their experience raising a child with autism and being engaged in the education of a child
with autism. Current research indicates that several changes are needed to help parents who
are planning the future of their child with autism.
Implications for Practice
First, social workers should be aware about parents’ worries about planning the future
of children with autism. Parents worry, and their anxiety may be greater than they express.
They experience anxiety early on when they notice something unusual with their child and
from that point on, they experience constant concerns.
Second, as professionals, social workers should be attentive to language and attitudes
toward disability. Language that discriminates and stigmatizes is not supportive and should
not be used in relation to parents of children with autism or with any service receivers.
Awareness about attitudes toward disability and expressing empathy and consideration for
their experience will help guarantee quality services to the recipients.
Third, social worker may facilitate connections between parents of children with
autism through support groups. Parenting a child with autism could be an extensive process
for some families; therefore, connection with other parents through support groups may help
and make a real difference in families’ lives and experiences.
Implications for Policy
BC’s Ministry of Child and Family Development (MCFD) is the sole provider of
autism funding and these funds are based on an agreed assessment. The wait time for an

34

AUTISM AND PLANNING THE FUTURE
assessment with the British Columbia Autism Assessment Network (BCAAN), could be up to
one year. In addition, the interviewees identified late diagnosis as a barrier in planning the
future of their child with autism. It is well-known that early intervention in autism is the
child’s best hope for the future (Love, Carr, Almason, & Petursdottir, 2009); therefore, a
change in policy regarding an increase of the assessment program would be beneficial for
parents in order to plan the future.
Implications for Research
In terms of research, there is still much to be done in the area of planning the future
for children with autism. The sample size in this research was too small to be representative
of this unique population. A larger sample size would potentially provide stronger and more
cohesive results for future research projects. Additionally, the research sample was
comprised in part of professionals who all saw the worries and barriers in parenting a child
with autism in their professional experience. A future research project may choose to focus
only on the parents’ experiences.
Conclusions
Findings from this research indicate that we, as social workers, need to pay attention
to helping those with autism, and their families, plan a future. Children with ASD are unique,
family experiences are varied, as are the expectations, and the decisions about future planning
will be different as well. Diagnosis of autism affects each member of the family differently.
Some families manage to cope with stressful situations and be with their children, while
others need help to adapt to the new life situation.
I wish to emphasize the importance of attending to the emotional and personal needs
of families, especially the parents of a child with autism. Without exception, parents face
worries. Several worries that the parents faced were highlighted by parents’ concern that they

35

AUTISM AND PLANNING THE FUTURE
will not always have the power to help their children, the parents’ concern related to their
children’s constant need for help and support, and the parents’ anxiety related to their
children’s ability to care for themselves when they become adults.
Social work for families with a child with autism involves diverse tasks. Some of the
tasks include contributing to the assessment process, supporting and involving the family in
actions relating to the recovery of the child; guiding the parents in planning the future,
offering support regarding educational integration, and advocating for a change of national
policies.
There are plenty of barriers to planning the future. Parents may be unable, on their
own, to address and overcome them, but professionals are coming to help parents to advocate
on their child’s behalf when they move to different stages in their life. Several barriers faced
by parents were identified as the late diagnosis, professional language barrier, and the funding
and resources necessary to cover the cost of therapies.
There are many approaches, therapies, and interventions for improving the lives of
families with a member who has autism, and for improving the lives of people with ASD. No
two families are the same as no two people are the same, so choosing the right therapy for a
family can be challenging. In planning the future, each family has worries and face barriers
but starting to plan the future may help both parties, - the parents, and their child.

36

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Appendix B
Hello,
My name is Laurentia Rosu and I am currently conducting a study to explore the
challenges parents face when planning the future of their child with autism. The title of the
research is "Parents as experts: Autism and planning the future".
Purpose/Objectives of the Study
In this study, I am hoping to learn more about the worries of parents regarding the
future of their child with autism.
Procedures involved in the Research
You are invited to participate in this study if you have a child diagnosed with autism
or if you work with a child with autism as a specialist (Social Worker, Teacher, Special
Education Assistant, Occupational Therapist, Behavioural Consultant). If you agree to take
part in this study, there will be one individual interview which will be one-hour long.
You will be asked a series of open-ended questions that explore the concerns about
the future of your child with autism. If you are a specialist, you will be asked about parent’s
concerns while planning the future for their child with autism.
The interview will be arranged at a time and location which is convenient for you.
With your permission, the interview will be audio-recorded. Your decision to participate or
not participate will not be shared with anyone. Your confidentiality will be respected. At the
interview, you will be provided with a consent form giving future information about the
study. If you decide to withdraw from the study, you may withdraw at any time and without
giving any reasons for your decision.
The ethics of this research project have been reviewed and approved by the UFV
Human Research Ethics Board. If you have any concerns regarding your rights or welfare as
a participant in this research study, please contact the Ethics Officer at 604-557-4011 or
Research.Ethics@ufv.ca.
Each participant will receive a $10 Coffee Card.
If you would like to participate in my research, please feel free to contact me.
Sincerely,
Laurentia Rosu, MSW Student at the University of the Fraser Valley
(cell),

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AUTISM AND PLANNING THE FUTURE
Appendix C
Laurentia Rosu
University of the Fraser Valley
33844 King Road
Abbotsford, BC V2S 7M8
604-504-7441

"Parents as experts: Autism and planning the future"
Letter of Informed Consent for Interview

My name is Laurentia Rosu and I am a Master of Social Work student at the
University of the Fraser Valley. As part of my program, I am doing a research study that I
would like to invite you to participate in. The ethics of this research study has been reviewed
and approved by the UFV Research Ethics Board. Your participation is entirely voluntary, so
it is up to you to decide whether or not to take part in this study.
This project will assess how the parents of an ASD child, and professionals supporting
these parents, perceive the parent’s role in planning the future of their child. Through this
research, my objectives are to explore parent’s acknowledgment about the future of their ASD
child. Also, this research will attempt to assess the parent’s concerns about the future of their
ASD child and to establish the role of professionals in helping these families plan for the
future of their ASD child.
Procedures involved in the Research
The interview will be arranged at a time and location which is convenient for the
participants. The meeting will take approximately one hour and there will be general
questions about the process of parenting/teaching a child with autism and how they want to
fulfill their plans for their child's future. The interview will be audio-recorded, and the
researcher will take notes.
Potential Harms, Risks or Discomforts to Participants
The interview will involve discussing your thoughts and feelings about plans for your
child with autism, or if you’re a professional, your student with autism. Depending on your
personal experience, it is possible that you might experience some emotional discomfort
answering questions, so please note that you are not obligated to answer questions that cause

39

AUTISM AND PLANNING THE FUTURE
Appendix D

Questions for parents:
1. Tell me about your experience raising a child with autism?
2. Tell me about your biggest worries about future of your child with autism?
3. Tell me about your barriers in planning the future of your child with autism?
4. Please, describe what are you doing now to plan the future of your child with autism?
5. Tell me about the time when you felt confident about planning the future of your child
with autism?

Questions for professional participants:
1. Tell me about your work experience with children with ASD?
2. In your work experience, what do you identified as being the biggest worries of
parents about future of their child with ASD?
3. In your work experience, what do you identified as being the barriers of parents in
planning the future of their child with autism?
4. From your work experience, what the parents are doing now to plan the future of
their child with autism?
5. Please, describe a success story about helping parents in planning the future of
their child with autism?

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AUTISM AND PLANNING THE FUTURE
References

Accurso, E. C., Garland, A. F., Haine-Schlagel, R., Brookman-Frazee, L., & Baker-Ericzén,
M. J. (2015). Factors contributing to reduced caregiver strain in a publicly funded
child mental health system. Journal of Emotional & Behavioural Disorders, 23(3),
131-143. doi:10.1177/1063426614532948.
Adak, B., & Halder, S. (2017). A review-based prevalence of autism spectrum disorder.
Indian Journal of Health & Wellbeing, 8(8), 836-846.
Ali, A., King, M., Strydom, A., & Hassiotis, A. (2016). Self-reported stigma and its
association with socio-demographic factors and physical disability in people with
intellectual disabilities: Results from a cross-sectional study in England. Social
Psychiatry & Psychiatric Epidemiology, 51(3), 465-474. doi:10.1007/s00127-0151133-z.
American Psychiatric Association. (2013). Diagnostic and Statistical Manual of Mental
Disorders: DSM-5. Washington, D.C: American Psychiatric Association.
Angell, A. M., & Solomon, O. (2014). The social life of health records: Understanding
families' experiences of autism. Social Science & Medicine, 11750-57.
doi:10.1016/j.socscimed.2014.07.020.
Badone, E., Nicholas, D., Roberts, W., & Kien, P. (2016). Asperger's syndrome, subjectivity
and the senses. Culture, Medicine & Psychiatry, 40(3), 475-506. doi:10.1007/s11013016-9484-9.
Baines, D. (2011). An overview of Anti-Oppressive Practice. In D. Baines Doing AntiOppressive Practice: Social Justice Social Work (2nd Edition, pp. 1-24). Halifax, NS:
Fernwood Publishing.
Baio, J. (2014). Prevalence of autism spectrum disorder among children aged 8 years. Autism
and Developmental Disabilities Monitoring Network, 11 Sites, United States, 2010.

43

AUTISM AND PLANNING THE FUTURE
MMWR Surveillance Summaries, 63(2), 1-21.
Bal, V. H., Kim, S., Cheong, D., & Lord, C. (2015). Daily living skills in individuals with
autism spectrum disorder from 2 to 21 years of age. Autism: The International
Journal of Research and Practice, 19(7), 774-784.
Barker, K., & Galardi, T. R. (2015). Diagnostic domain defense: Autism spectrum disorder
and the DSM-5. Social Problems, 62(1), 120-140. doi:10.1093/socpro/spu001.
Beaudry, J. B. (2016). Beyond (models of) disability? Journal of Medicine & Philosophy,
41(2), 210-228.
Benn, R., Akiva, T., Arel, S., & Roeser, R. W. (2012). Mindfulness training effects for parents
and educators of children with special needs. Developmental Psychology, 48(5), 14761487. doi:10.1037/a0027537.
Bleuler, E. (2005). Dementia Praecox ou Grupo das Esquizofrenias [Dementia praecox or the
group of schizophrenias] (J. N. Almeida & M. Sommer, trans.). Lisboa, Portugal:
Climepsi editores. (Original work published 1911).
Bluth, K., Roberson, P. E., Billen, R. M., & Sams, J. M. (2013). A stress model for couples
parenting children with autism spectrum disorders and the introduction of a
mindfulness intervention. Journal of Family Theory & Review, 5(3), 194-213.
doi:10.1111/jftr.12015.
Broach, S. (2016). Disabled children: a legal handbook. Legal Action Group.
Brockman, M., Hussain, K., Sanchez, B., & Turns, B. (2016). Managing child behaviour
problems in children with autism spectrum disorders: Utilizing structural and Solution
Focused Therapy with primary caregivers. American Journal of Family Therapy,
44(1), 1-10. doi:10.1080/01926187.2015.1099414.
Brookman-Frazee, L., Baker-Ericzén, M., Stadnick, N., & Taylor, R. (2012). Parent
perspectives on community mental health services for children with autism spectrum

44

AUTISM AND PLANNING THE FUTURE
disorders. Journal of Child & Family Studies, 21(4), 533-544. doi:10.1007/s10826011-9506-8.
Cachia, R., Anderson, A., & Moore, D. (2016). Mindfulness, stress and well-being in parents
of children with autism spectrum disorder: A systematic review. Journal of Child &
Family Studies, 25(1), 1-14. doi:10.1007/s10826-015-0193-8.
Canada, G. O. (2015, November 30). Table 1.11. Prevalence of disability for adults by sex
and age group, British Columbia, 2012. Retrieved November 20, 2017, from
http://www.statcan.gc.ca/pub/89-654-x/2013001/tbl/tbl1.11-eng.htm .
Carbone, P. S., Behl, D. D., Azor, V., & Murphey, N. A. (2010). The medical home for
children with autism spectrum disorders: Parent and pediatrician perspectives. Journal
of Autism and Developmental Disorders, 40, 317–324.
Carmody, J., & Baer, R. A. (2008). Relationships between mindfulness practice and levels of
mindfulness, medical and psychological symptoms, and well-being in a mindfulnessbased stress reduction program. Journal of Behavioural Medicine, 31(1), 23–33.
Carter, E. W., Austin, D., & Trainor, A. A. (2012). Predictors of postschool employment
outcomes for young adults with severe disabilities. Journal of Disability Policy
Studies, 23(1), 50-63. doi:10.1177/1044207311414680.
Carter, E. W., Swedeen, B., Walter, M. J., Moss, C. K., & Hsin, C. (2011). Perspectives of
young adults with disabilities on leadership. Career Development for Exceptional
Individuals, 34(1), 57-67.
Chow, W. S., & Priebe, S. (2013). Understanding psychiatric institutionalization: A
conceptual review. BMC Psychiatry, 13(1), 1-14. doi:10.1186/1471-244X-13-169.
Christensen, D. L., Baio, J., Van Naarden Braun, K., Bilder, D., Charles, J., Constantino, J.
N., & ... Yeargin-Allsopp, M. (2016). Prevalence and characteristics of autism
spectrum disorder among children aged 8 years - Autism and Developmental

45

AUTISM AND PLANNING THE FUTURE
Disabilities Monitoring Network, 11 Sites, United States, 2012. MMWR Surveillance
Summaries, 65(3), 1-23.
Cidav, Z., Marcus, S. C., & Mandell, D. S. (2012). Implications of childhood autism for
parental employment and earnings. Pediatrics, (4), 617.
Corrigan P. W. (2000). Mental health stigma as social attribution: Implications for research
methods and attitude change. Clinical Psychology: Science and Practice 7, 48–67.
Crea, K., Dissanayake, C., & Hudry, K. (2016). Proband mental health difficulties and
parental stress predict mental health in toddlers at high-risk for autism spectrum
disorders. Journal of Autism & Developmental Disorders, 46(10), 3242-3257.
doi:10.1007/s10803-016-2861-y.
Davis, N., & Carter, A. (2008). Parenting stress in mothers and fathers of toddlers with autism
spectrum disorders: Associations with child characteristics. Journal of Autism &
Developmental Disorders, 38(7), 1278-1291.
Davis, S. (2014). Community Mental Health in Canada: Policy, Theory, and Practice,
Revised & Expanded Edition. Vancouver, BC: UBC Press.
Da Paz, N. S., & Wallander, J. L. (2017). Interventions that target improvements in mental
health for parents of children with autism spectrum disorders: A narrative review.
Clinical Psychology Review, 511-14. doi:10.1016/j.cpr.2016.10.006.
Deigh, J. (2013). Human rights as political rights: A critique. Journal of Social Philosophy,
44(1), 22-42.
Devandas Aguilar, C. (2017). Social protection and persons with disabilities. International
Social Security Review, 70(4), 45-65. doi:10.1111/issr.12152.
de Bruin, E. I., Blom, R., Smit, F. A., van Steensel, F. A., & Bögels, S. M. (2015).
"MYmind": Mindfulness training for Youngsters with autism spectrum disorders and
their parents. Autism: The International Journal of Research and Practice, 19(8), 906-

46

AUTISM AND PLANNING THE FUTURE
914.
de Shazer, S., & Berg, I. K. (1997). 'What works?' Remarks on research aspects of SolutionFocused Brief Therapy. Journal of Family Therapy, 19(2), 121.
de Shazer, S., & Molnar, A. (1984). Four useful interventions in brief family therapy. Journal
of Marital and Family Therapy, 10(3), 297-304.
Dodd, S. (2004). Understanding Autism. Marrickville, N.S.W.: Elsevier Australia.
Dolan, T., & Miller, B. (2011). A call to action: UN convention on the rights of persons with
disabilities: making domestic implementation real and meaningful. Abilities, (85), 4041.
Dudley, J.R. (2011). Research Methods for Social Work (2nd edition). Boston, MA: Allyn &
Bacon.
Dumais, L., & Archambault, L. (2015). Between protection and activation: People with
disabilities in the Social Investment State. Canadian Journal of Disability Studies,
4(2), 77.
Dunn, D. S., & Andrews, E. E. (2015). Person-first and identity-first language: Developing
psychologists’ cultural competence using disability language. American Psychologist,
70(3), 255-264. doi:10.1037/a0038636.
Fernańdez-Alcántara, M., García-Caro, M. P., Pérez-Marfil, M. N., Hueso-Montoro, C.,
Laynez-Rubio, C., & Cruz-Quintana, F. (2016). Feelings of loss and grief in parents of
children diagnosed with autism spectrum disorder (ASD). Research in Developmental
Disabilities, 55312-321. doi:10.1016/j.ridd.2016.05.007.
Ferraioli, S. J., & Harris, S. L. (2013). Comparative effects of mindfulness and skills-based
parent training programs for parents of children with autism: Feasibility and
preliminary outcome data. Mindfulness, (2). 89. doi:10.1007/s12671-012-0099-0.
Foster, M. V. (2015) "School Social Workers’ Role in Supporting Parents of a Child with

47

AUTISM AND PLANNING THE FUTURE
Autism". Master of Social Work Clinical. Research Papers. Paper 450.
http://sophia.stkate.edu/msw_papers/450.
Gauthier-Boudreault, C., Gallagher, F., & Couture, M. (2017). Specific needs of families of
young adults with profound intellectual disability during and after transition to
adulthood: What are we missing? Research in Developmental Disabilities, 6616-26.
doi:10.1016/j.ridd.2017.05.001.
Gregory, M., & Holloway, M. (2005). Language and the shaping of social work. The British
Journal of Social Work, 35(1), 37-53.
Goldberg S, Del Re A, Hoyt W, Davis J. (2014) The secret ingredient in mindfulness
interventions? A case for practice quality over quantity. Journal of Counseling
Psychology. 61(3):491-497.
Grollier, M., Leblanc, M., & Michel, S. (2016). Original article: Severe autism, Asperger’
syndrome, differences and similarities. L'évolution Psychiatrique, 81e37-e51.
doi:10.1016/j.evopsy.2015.07.007.
Haegele, J. A., & Hodge, S. (2016). Disability discourse: Overview and critiques of the
medical and social models. Quest (00336297), 68(2), 193-206.
Hahler, E., & Elsabbagh, M. (2015). Autism: A global perspective. Current Developmental
Disorders Reports, 2(1), 58. doi:10.1007/s40474-014-0033-3.
Hall, H. R. (2012). Families of children with autism: Behaviours of children, community
support and coping. Issues in Comprehensive Pediatric Nursing, 35(2), 111-132.
doi:10.3109/01460862.2012.678263.
Harris, K. I. (2015). The unexpected journey shared by families: Using literature to support
and understand families raising a child with disabilities. Early Childhood Education
Journal, 43(6), 473-484.
Hastings, R., Kovshoff, H., Ward, N., degli Espinosa, F., Brown, T., & Remington, B. (2005).

48

AUTISM AND PLANNING THE FUTURE
Systems analysis of stress and positive perceptions in mothers and fathers of preschool children with autism. Journal of Autism & Developmental Disorders, 35(5),
635-644.
Hertz-Picciotto, I., Croen, L. A., Hansen, R., Jones, C. R., Van De Water, J., & Pessah, I. N.
(2006). The charge study: An epidemiologic investigation of genetic and
environmental factors contributing to autism. Environmental Health Perspectives,
114(7), 1119-1125. doi:10.1289/ehp.8483.
Heritage, C. (2017). About human rights. Retrieved from https://www.canada.ca/en/canadianheritage/services/about-human-rights.html.
Hewitt, A., Lightfoot, E., Bogenschutz, M., McCormick, K., Sedlezky, L., & Doljanac, R.
(2010). Parental caregivers' desires for lifetime assistance planning for future supports
for their children with intellectual and developmental disabilities. Journal of Family
Social Work, 13(5), 420-434.
Hick, S. & Stokes, J. (2016). Social Work in Canada: An Introduction (4th ed.). Toronto:
Thompson Educational Publishing.
Hoffman, S. J., Sritharan, L., & Tejpar, A. (2016). Is the UN Convention on the Rights of
Persons with Disabilities impacting mental health laws and policies in high-income
countries? A case study of implementation in Canada. BMC International Health &
Human Rights, 161-18. doi:10.1186/s12914-016-0103-1.
Hogenboom, M., & Woodward, B. (2013). Autism: A Holistic Approach. Edinburgh: Floris
Books.
Honda, H. (2013). Original article: How can epidemiological studies contribute to
understanding autism spectrum disorders? Brain and Development, 35(Exploring
Autism Research Collaboration between Japan and United States Joint Academic
Conference on Autism Spectrum Disorders (ASD), 102-105.

49

AUTISM AND PLANNING THE FUTURE
doi:10.1016/j.braindev.2012.06.003.
Hollin, G. J., & Pilnick, A. (2015). Infancy, autism, and the emergence of a socially
disordered body. Social Science & Medicine, 143279-286.
doi:10.1016/j.socscimed.2014.07.050.
Hwang, Y., Kearney, P., Klieve, H., Lang, W., & Roberts, J. (2015). Cultivating mind:
Mindfulness interventions for children with autism spectrum disorder and problem
behaviours, and their mothers. Journal of Child & Family Studies, 24(10), 3093-3106.
doi:10.1007/s10826-015-0114-x.
Infant Development. (2018). Retrieved from https://www.develop.bc.ca/programs/infantdevelopment/ .
Kanne, S., Gerber, A., Quirmbach, L., Sparrow, S., Cicchetti, D., & Saulnier, C. (2011). The
role of adaptive behaviour in autism spectrum disorders: Implications for functional
outcome. Journal of Autism & Developmental Disorders, 41(8), 1007-1018.
doi:10.1007/s10803-010-1126-4.
Kim, J. S., & Franklin, C. (2015). Understanding emotional change in Solution-Focused Brief
Therapy: Facilitating positive emotions. Best Practice in Mental Health, 11(1), 25-41.
Kuzniewicz, M. W., Wi, S., Qian, Y., Walsh, E. M., Armstrong, M. A., & Croen, L. A. (2014).
Prevalence and neonatal factors associated with autism spectrum disorders in preterm
infants. The Journal of Pediatrics, 16420-25. doi:10.1016/j.jpeds.2013.09.021.
Lash, M. D. (2004). Living and Learning Mindfully. Paths of Learning, (22), 20-21.
Love, J. R., Carr, J. E., Almason, S. M., & Petursdottir, A. I. (2009). Early and intensive
behavioral intervention for autism: A survey of clinical practices. Research in Autism
Spectrum Disorders, 3421-428. doi:10.1016/j.rasd.2008.08.008.
Lu, J., & Kim, K. H. (2017). Understanding self-report multidimensional attitudes scale
toward people with disabilities: An exploratory analysis. Rehabilitation Psychology,

50

AUTISM AND PLANNING THE FUTURE
62(2), 110-118. doi:10.1037/rep0000138.
Matthews, T., Danese, A., Wertz, J., Odgers, C. L., Ambler, A., Moffitt, T. E., & Arseneault,
L. (2016). Social isolation, loneliness, and depression in young adulthood: A
behavioural genetic analysis. Social Psychiatry and Psychiatric Epidemiology, 51(3),
339-348. doi:10.1007/s00127-016-1178-7.
Margari, L., Lamanna, A. L., Craig, F., Simone, M., & Gentile, M. (2014). Autism spectrum
disorders in XYY syndrome: Two new cases and systematic review of the literature.
European Journal of Pediatrics, 173(3), 277-283. doi:10.1007/s00431-014-2267-9.
Memari, A. H., Mirfazeli, F. S., Kordi, R., Shayestehfar, M., Moshayedi, P., & Mansournia,
M. A. (2017). Cognitive and social functioning are connected to physical activity
behaviour in children with autism spectrum disorder. Research in Autism Spectrum
Disorders, 3321-28. doi:10.1016/j.rasd.2016.10.001.
Milton, D. M. (2016). Disposable dispositions: Reflections upon the work of Iris Marion
Young in relation to the social oppression of autistic people. Disability & Society,
31(10), 1403-1407. doi:10.1080/09687599.2016.1263468.
Ministry of Children and Family Development. (2017). A Parent’s Handbook: Your Guide to
Autism Programs. Retrieved from:
https://www2.gov.bc.ca/assets/gov/health/managing-yourhealth/autism/autism_handbook_parents_guide.pdf .
Mogro-Wilson, C., Davidson, K., & Bruder, M. B. (2014). An empowerment approach in
teaching a class about autism for social work students. Social Work Education, 33(1),
61-76. doi:10.1080/02615479.2012.734802.
Morrissey, F. (2012). The United Nations Convention on the Rights of Persons with
Disabilities: A new approach to decision-making in mental health law. European
Journal of Health Law, 19(5), 423-440. doi:10.1163/15718093-12341237.

51

AUTISM AND PLANNING THE FUTURE
Navot, N., Jorgenson, A. G., Vander Stoep, A., Toth, K., & Webb, S. J. (2016). Family
planning and family vision in mothers after diagnosis of a child with autism spectrum
disorder. Autism: The International Journal of Research and Practice, 20(5), 605-615.
Nayar, U. S., Stangl, A. L., De Zalduondo, B., & Brady, L. M. (2014). Reducing stigma and
discrimination to improve child health and survival in low- and middle-income
countries: Promising approaches and implications for future research. Journal of
Health Communication, 19142-163. doi:10.1080/10810730.2014.930213.
Nicholas, J. S., Charles, J. M., Carpenter, L. A., King, L. B., Jenner, W., & Spratt, E. G.
(2008). Prevalence and characteristics of children with autism spectrum disorders.
Annals of Epidemiology, (2), 130.
Nicholson, L., & Cooper, S. (2013). Social exclusion and people with intellectual disabilities:
A rural-urban comparison. Journal of Intellectual Disability Research, 57(4), 333346. doi:10.1111/j.1365-2788.2012.01540.x.
Noble, C. (2004). Postmodern thinking: Where it is taking social work? Journal of Social
Work, 4(3), 289-304.
Noel, J., Cascio, C. J., Wallace, M. T., & Park, S. (2017). The spatial self in schizophrenia
and autism spectrum disorder. Schizophrenia Research, 1798-12.
doi:10.1016/j.schres.2016.09.021.
Nuttall, J. R. (2017). The plausibility of maternal toxicant exposure and nutritional status as
contributing factors to the risk of autism spectrum disorders. Nutritional
Neuroscience, 20(4), 209-218.
Ooi, K. L., Ong, Y. S., Jacob, S. A., & Khan, T. M. (2016). A meta-synthesis on parenting a
child with autism. Neuropsychiatric Disease and Treatment, 745.
doi:10.2147/NDT.S100634.
Orsmond, G., Shattuck, P., Cooper, B., Sterzing, P., & Anderson, K. (2013). Social

52

AUTISM AND PLANNING THE FUTURE
participation among young adults with an autism spectrum disorder. Journal of Autism
& Developmental Disorders, 43(11), 2710-2719. doi:10.1007/s10803-013-1833-8.
Paul, H. A. (2008). Review of more than miracles: The state of solution-focused brief therapy.
Child & Family Behaviour Therapy, 30(1), 84-89.
Peers, D., Spencer-Cavaliere, N., & Eales, L. (2014). Say what you mean: Rethinking
disability language in adapted physical activity quarterly. Adapted Physical Activity
Quarterly, 31(3), 265-282.
Perlich, J., & Whitt, D. (2010). Millennial mythmaking: Essays on the power of science
fiction and fantasy literature, films and games. Jefferson, NC: McFarland & Co.
Population attributable fractions for three perinatal risk factors for autism spectrum disorders,
2002 and 2008 autism and developmental disabilities monitoring network. (2014).
Annals of Epidemiology, (4), 260. doi:10.1016/j.annepidem.2013.12.014.
Pozón, S. R. (2016). Research Paper: The convention on the rights of persons with disabilities
and mental health law: A critical review. Alter - European Journal of Disability
Research, Revue Européen De Recherche Sur Le Handicap, 10301-309.
doi:10.1016/j.alter.2016.07.001.
Pryor J. B. & Reeder G. D. (2011). HIV-related stigma: HIV/AIDS in the post-HAART era.
Manifestations, Treatment, and Epidemiology (eds J. C. Hall, B. J. Hall & C. J.
Cockerell), pp. 790–806. PMPH-USA. Ltd., Shelton, CT.
Rahul, S. (2013). The family and family structure classification redefined for the current
times. Journal of Family Medicine and Primary Care, Vol 2, Iss 4, Pp 306-310
(2013), (4), 306. doi:10.4103/2249-4863.123774.
Robert, M., Leblanc, L., & Boyer, T. (2015). When satisfaction is not directly related to the
support services received: Understanding parents' varied experiences with specialised
services for children with developmental disabilities. British Journal of Learning

53

AUTISM AND PLANNING THE FUTURE
Disabilities, 43(3), 168-177. doi:10.1111/bld.12092.
Roeden, J. M., Maaskant, M. A., & Curfs, L. G. (2014). Processes and effects of SolutionFocused Brief Therapy in people with intellectual disabilities: A controlled study.
Journal of Intellectual Disability Research, (4), 307.
Russell, S., & McCloskey, C. R. (2016). Parent perceptions of care received by children with
an autism spectrum disorder. Journal of Pediatric Nursing, 31(SI: Achievements,
Challenges, and Implications for Pediatric Nursing in the Post-Genomic Era), 21-31.
doi:10.1016/j.pedn.2015.11.002.
Saunders, B. S., Tilford, J. M., Fussell, J. J., Schulz, E. G., Casey, P. H., & Kuo, D. Z. (2015).
Financial and employment impact of intellectual disability on families of children with
autism. Families, Systems, & Health, 33(1), 36-45. doi:10.1037/fsh0000102.
Schertz, M., Karni-Visel, Y., Tamir, A., Genizi, J., & Roth, D. (2016). Family quality of life
among families with a child who has a severe neurodevelopmental disability: Impact of
family and child socio-demographic factors. Research in Developmental Disabilities,
53-5495-106. doi:10.1016/j.ridd.2015.11.028.
Schor, E. L. (2003). Family pediatrics: Report of the task force on the family. Pediatrics, 111
(6), 1541–1571.
Schroeder, D. d. (2012). Human Rights and Human Dignity. Ethical Theory & Moral
Practice, 15(3), 323-335.
Singh, J. S. (2016). Parenting work and autism trajectories of care. Sociology of Health &
Illness, 38(7), 1106-1120. doi:10.1111/1467-9566.12437.
Smock Jordan, S., & Turns, B. (2016). Utilizing Solution-Focused Brief Therapy with
families living with autism spectrum disorder. Journal of Family Psychotherapy,
27(3), 155-170.
Stein, L. l., Foran, A. C., & Cermak, S. (2011). Occupational patterns of parents of children

54

AUTISM AND PLANNING THE FUTURE
with autism spectrum disorder: Revisiting Matuska and Christiansen's Model of
Lifestyle Balance. Journal of Occupational Science, 18(2), 115-130.
Strunk, J., Leisen, M., & Schubert, C. (2017). Using a multidisciplinary approach with
children diagnosed with autism spectrum disorder. Journal of Interprofessional
Education & Practice, 860-68. doi:10.1016/j.xjep.2017.03.009.
Supported Child Development. BC Centre For Ability. (2018). Retrieved from http://bccfa.org/programs-services/supported-child-development/supported-childdevelopment/ .
Trepper, T. S. (2012). Solution-Focused Brief Therapy with families. Asia Pacific Journal of
Counselling & Psychotherapy, 3(2), 137. doi:10.1080/21507686.2012.718285.
The Canadian Human Rights Commission’s 2016 Annual Report to Parliament. (2017).
Retrieved from http://www.chrcreport.ca/assets/pdf/CHRC-Annual-2016-EN-web.pdf
Transition Planning for Youth with Special Needs: A Community Support Guide. (n.d.).
Retrieved from https://www2.gov.bc.ca/assets/gov/family-and-socialsupports/support_guide.pdf .
Tunnicliffe, J. (2014). Canada and the Human Rights Framework: Historiographical Trends.
History Compass, 12(10), 807-817. doi:10.1111/hic3.12197.
Ugiagbe, E. O., & Eweka, H.E. (2014). Systemic oppression and rights of the minorities:
Discourse of the reflections on nigerian society. Mediterranean Journal of Social
Sciences, 5(4), 516-526. doi: 10.5901/mjss.2014.v5n4p516.
Uno, Y., Uchiyama, T., Kurosawa, M., Aleksic, B., & Ozaki, N. (2015). Early exposure to the
combined measles–mumps–rubella vaccine and thimerosal-containing vaccines and
risk of autism spectrum disorder. Vaccine, 332511-2516.
doi:10.1016/j.vaccine.2014.12.036.
Vallotton, C., Harewood, T., Froyen, L., Brophy-Herb, H., & Ayoub, C. (2016). Child

55

AUTISM AND PLANNING THE FUTURE
behavior problems: Mothers’ and fathers’ mental health matters today and tomorrow.
Early Childhood Research Quarterly, 3781-93. doi:10.1016/j.ecresq.2016.02.006.
Vanegas, S. B., & Abdelrahim, R. (2016). Characterizing the systems of support for families
of children with disabilities: A review of the literature. Journal of Family Social Work,
19(4), 286-327. doi:10.1080/10522158.2016.1218399.
Volden, J., Duku, E., Shepherd, C., Ceorgiades, S., Bennett, T., Rezze, B. D., & ... Elsabbagh,
M. (2015). Service utilization in a sample of preschool children with autism spectrum
disorder: A Canadian snapshot. Paediatrics & Child Health (1205-7088), 20(8), e43e47.
Watt, M., & Wagner, S. L. (2013). Parenting a child with autism spectrum disorder: Parental
work context. Community, Work & Family, 16(1), 20-38.
doi:10.1080/13668803.2012.692890.
Werner, S., & Shulman, C. (2015). Does type of disability make a difference in affiliate
stigma among family caregivers of individuals with autism, intellectual disability, or
physical disability? Journal of Intellectual Disability Research, 59(3), 272-283.
doi:10.1111/jir.12136.
What Are Human Rights? (2017) (n.d.). Retrieved from https://www.chrcccdp.gc.ca/eng/content/what-are-human-rights-0.
What is Autism? (2017) (n.d.). Retrieved from http://www.autismspeaks.ca/aboutautism/what-is-autism/ .
Wilson, M. C., & Scior, K. (2015). Implicit attitudes towards people with intellectual
disabilities: Their relationship with explicit attitudes, social distance, emotions and
contact. Plos ONE, 10(9), 1-19. doi:10.1371/journal.pone.0137902.
World Health Organization. (2001). International classification of functioning, disability and
health. Geneva, Switzerland. Retrieved from http://www.who.int/ncd/disability.html.

56

AUTISM AND PLANNING THE FUTURE
World Health Organization. (2003). International consultation to review community-based
rehabilitation. Retrieved from http://www.who.int/ncd/disability.html.
Young, I. M. (1990). Justice and the politics of difference. Princeton: Princeton University
Press.
Young, I. M. (2000). Five faces of oppression. In M. Adams & W. Blumenfeld & R. Castaneda
& H. Hackman & M. Peters & X. Zuniga (Eds.), Readings for diversity and social
justice: An anthology on racism, antisemitism, sexism, heterosexism, ableism and
classism. New York: Routledge Press.
Zhang, L., & Haller, B. (2013). Consuming image: How mass media impact the identity of
people with disabilities. Communication Quarterly, 61(3), 319-334.
doi:10.1080/01463373.2013.776988.
Zhang, W., Yan, T., Du, Y., & Liu, X. (2014). Brief report: effects of Solution-Focused Brief
Therapy group-work on promoting post-traumatic growth of mothers who have a child
with ASD. Journal of Autism and Developmental Disorders, (8), 2052.
doi:10.1007/s10803-014-2051-8.

57