The Scientific Study of Parents and Caregivers of Children with ASD: A Flourishing Field but Still Work to be Done
The Scientific Study of Parents and Caregivers of Children with ASD: A Flourishing Field but Still Work to be Done
Anders Nordahl‑Hansen 0 1 2 4
Logan Hart 0 1 2 4
Roald A. Øien 0 1 2 4
0 Child Study Center, Yale University School of Medicine , 230 South Frontage Road, P.O. Box 207900, New Haven, CT , USA
1 Department of Special Needs Education, University of Oslo , P.O. Box 1140, Blindern, 0318 Oslo , Norway
2 Roald A. Øien
3 Anders Nordahl-Hansen
4 Department of Psychology, UiT - The Arctic University of Norway , 9037 Tromsö , Norway
There is a long history of research on parents and caregivers of individuals within autism. Parents and other primary caregivers typically play the most important part in the lives of persons with ASD although the need for support as the child becomes of age varies widely. This special issue includes 30 articles on central areas related to parenting and caregiving for people with ASD. Some of the key themes include intervention and training, mental health issues related to parent and family stress, measurement and assessment, and parent-child transactional processes. Other articles in this issue consider different but equally important topics such as sibling as potential future caregivers and parent support of preschool peer relationships. This special issue in the Journal of Autism Spectrum Disorders focuses on parents, primary caregivers of individuals with autism spectrum disorders. We were pleased to receive over a hundred manuscripts. The high number of submissions was not unexpected given the breadth of the topic that has occupied a central position in the early years of autism research and continues to do so. Most submissions for this special issue, in one way or another focus on parents and/ or parent-child related topics within areas such as mental health and stress, intervention, parent-child interaction, and measurement. However, other parenting- and caregiverrelated topics are also addressed. All focus on topics that
Parents; Caregivers; Parent-child interaction; Autism
Anders Nordahl-Hansen and Roald A. Øien contributed equally to
the main content of the manuscript.
are all in need of more attention from the autism research
Parents go through pregnancy with increasing hope and
dreams for their future child. Friends, vacations, school,
education, falling in love, marriage, grandchildren, are examples
of thoughts that might run through a becoming parents mind.
As a parent, you cannot be prepared for the process that
leads to your child receiving an ASD diagnosis. The way
parents deal with this process differs widely but there are
also commonalities in terms of what parents are concerned
for after their child receives an ASD diagnosis. Common
issues include the awareness that your child might not
experience what you as a parent had hoped and dreamed for, or
concerns for the future if something happens to the parents.
Feelings of joy and pride in the child’s accomplishments can
be the same as what other parents feel although the
accomplishments per se may be different. Some parents of course
see their child with ASD go through the school system and
higher education going on to have good secure jobs, a family
of their own and friends. Nevertheless, even here the road
is typically a rockier one. For instance, bullying of autistic
persons in school and the workplace is common
et al. 2017)
, which can lead to, or further compound
mental health problems like anxiety and depression. A common
challenge for primary caregivers of children with autism is
seeking out the best intervention opportunities. One study
in this special issue offers a glimpse into parents
understanding of this less than straightforward task of choosing
an intervention for one’s child
(Shepherd et al. 2017)
results of the study indicate that professionals, such as
paediatricians, play an important role in the process of guiding
and influencing parents’ intervention choices. The authors
also note that a key factor for parents when selecting specific
interventions relates to the individual child’s needs. Thus,
there is an important responsibility resting on professionals
to provide to the parents updated information on
best-practice interventions that address these individual needs. This
is of course not an easy task as there is a lack of evidence
supporting one-size-fits-all type intervention approaches and
the access and quality of services may vary widely based on
location. Also, professionals may need to aid parents in
finding specific interventions to deal with specific problems. The
importance of interventions targeting mastery of confined
skills such as toilet-training cannot be overstated. Another
frequent challenge relates to sleep difficulties; these impact a
substantial proportion of children with ASD, and, of course,
their parents as well. One study in this issue compared two
parent-implemented intervention approaches intended to
enhance sleep in children with ASD where the bedtime
fading approach were reported to increase children’s sleep
duration as well as decreasing sleep onset latency
. The difference a good night’s sleep makes
should not be under-estimated.
Issues of measurement and definition are crucial to the
scientific endeavour. Various types of psychometric
quality indicators such as validity and reliability are of course
essential for a measure’s utility. Another question is to what
extent a measure has the sensitivity and/or specificity to
detect what it is set out to detect, whether it be
false-positives or false negatives for screening-instruments, or the
sensitivity to effects of change following treatment. When
it comes to instruments measuring change in for instance
social communication intervention studies, the quantity
of tools available is not the problem (there are too many,
making comparison across studies difficult) but rather
the quality and low consensus of what these tools should
(Bolte and Diehl 2013; Cunningham 2012)
many researchers, an ideal scenario following early
intervention for children with autism is typically to want to find
a decrease in core ASD impairments in the hope that such
changes cascade onto other areas of functioning. Thus, it is
natural to make use of tools that measure these core areas
of impairment. However, at the end of the day (literally), it
is not the interventionist but the child, parents and families
that will experience the effects possible effects following
interventions. In this respect an important inquiry is: What
child outcomes are valued by parents of children with ASD?
This is the question raised by McConachie and colleagues in
this issue. The results from this study indicate that parents
value a higher focus on measuring outcomes related to daily
living skills rather than symptom reduction in characteristic
ASD impairments (McConachie et al. 2017). The study
includes a top 10 rank of constructs parents view as
important measurement of progress or outcome, happiness being
ranked at number 1. A good example of a user-generated
measure is presented in one of the two articles from the
PACT-consortium in this special issue
(Leadbitter et al.
. The present issue also includes two separate studies
that compare parental scores to other sources of information
on early ASD behaviours and symptoms
(Larsen et al. 2017;
Macari et al. 2017)
. The results from these studies are in line
with other recent investigations of parent-reports that
demonstrate the importance of parents and caregivers as
invaluable sources of information on their child’s development
(Miller et al. 2017; Sacrey et al. 2018)
Several articles in the current issue address mental health
in relations to caregiving roles. The studies have relatively
large sample sizes and investigate interesting and important
areas such as potentially protective factors against distress
(Lindsey and Barry 2018)
between resilience and well-being of mothers of ASD and
other developmental disabilities
(Halstead et al. 2018)
Another study addresses Parental challenges in supporting
peer-relationships for their children with ASD showing that
there are parent resilience factors but high demands in
providing good peer opportunities for their preschool children
(Estes et al. 2017)
The study by
Nuttall et al. (2018
) is a good example of
how caregiving extends to more than parents. Their study
explores how typically developing adult siblings of persons
with ASD view their possible future roles as primary
caregivers, an area that needs more focus of attention in the
future. Another paper addresses functioning in siblings of
youth with ASD. An issue one of the guest editors for this
special issue can personally relate to with a daughter with
autism currently entering adolescence and her three younger
siblings. In this study Tudor et al. (2017) present a model
that includes ASD-, Family- and sibling-variables and lay
out some future directions for research and clinical practice.
As many other papers in this special issue, the Tudor et al.
study highlight how multiple factors interconnect and need
to be taken into account to get a deeper understanding of
developmental transaction processes and family dynamics.
Some Issues for the Future
Decades of work from researchers, clinicians, practitioners,
and knowledge and insights from parents, caregivers and
autistic people keep moving the field forward in shaping
current theory, research and practice. Focus on parents and
caregivers is no longer a neglected research area but some areas
could benefit from more explorations in the future. More
research on parents and caregivers in the typical non-western
societies would be very welcome. Further, understanding
cultural differences becomes no less important in a world
with increasing mobility and migration
(Fox et al. 2017)
cultural factors can be crucial to take into account when it
comes to effectively implementing parent-educative courses
or interventions of any sort. Additionally, culture differences
can impact results following assessments and clinical
decision making. It is also important that assessment tools are
culture sensitive. Most studies with parent samples solely
consist of mothers or an overwhelmingly large number of
mothers compared to fathers. More studies are needed that
focus on fathers of children with ASD. For instance, it would
be interesting to explore in further depths fathers play
strategies using similar observational techniques as deployed
by Shire et al. (2017) in this issue. More investigations on
females with ASD are also needed. A paper in this issue
presents parental perspectives on what challenges their
daughters with ASD may face
(Mademtzi et al. 2017)
. Since the
reasons for the sex-ratio between females and males with
ASD are not fully understood it is important that researchers,
in addition to investigating biological and genetic aspects,
also continue to shed light on sex-differences in regards to
We thank all the authors that sent their respective
manuscripts to this special issue. We are indebted to the reviewers
that contributed with their thoughtful considerations on the
various manuscripts. Special thanks go to the editorial and
production staff at JADD and Springer for excellent support
and cooperation. We dedicate this special issue to the
parents, caregivers and their children with ASD.
Author Contributions ANH and RAØ have contributed equally in
the process of writing the manuscript. LH has contributed with ideas,
design, writing and comments to the manuscript.
Compliance with Ethical Standards
Conflict of interest None of the authors report having any conflicts of
Ethical Approval This article does not contain any studies with human
participants or animals performed by any of the authors.
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