Exploring The Role of Physiotherapists in The Care of Children With Autism Spectrum Disorder
Exploring The Role of Physiotherapists in The Care of Children With Autism Spectrum Disorder
Exploring The Role of Physiotherapists in The Care of Children With Autism Spectrum Disorder
To cite this article: Cynthia Campos, Melissa Duck, Riley McQuillan, Lindsay Brazill, Shavaiz
Malik, Laura Hartman, Amy C McPherson, Barbara E Gibson & Patrick Jachyra (2019): Exploring
the Role of Physiotherapists in the Care of Children with Autism Spectrum Disorder, Physical &
Occupational Therapy In Pediatrics, DOI: 10.1080/01942638.2019.1585405
Introduction
Research consistently suggests that physical activity (PA) participation for children and
youth (hereafter children) with autism spectrum disorder (ASD) has a number of posi-
tive physical, psychosocial, and cognitive benefits. As noted by Jachyra and Gibson
(2016), PA participation can be conceptualized as any bodily movement that expends
energy and can include physical fitness exercise, sports, performance arts, play, and
active transport. Participation in PA can be structured (organized programs, sports) and
unstructured (free play, going for a walk), and is influenced by social, scientific, eco-
nomic, political, geographical and individual mechanisms that shape bodily move-
ment(s). For children with ASD, PA can increase aerobic capacity, enhance strength,
improve motor control, and improve overall fitness (Ketcheson, Hauck, & Ulrich,
2018). Furthermore, PA can facilitate the creation of routines and schedules, reduce
stress and anxiety, increase self-efficacy and self-esteem, and enhance overall psycho-
logical well-being (Lang et al., 2010; Lochbaum & Crews, 2003; Sowa & Meulenbroek,
2012). PA participation has also been shown to have positive benefits in managing
some symptoms and behaviors (Prupas & Reid, 2001; Sorensen & Zarrett, 2014). For
example participation in jogging, martial arts, and horseback riding has demonstrated
reductions in stereotypical behaviors such as rocking and hand flapping (Gabriels et al.,
2012; Nicholson, Kehle, Bray, & Heest, 2011). Similarly, moderate to vigorous PA has
been shown to improve attention, enhance performance on cognitive tasks, enhance
communication skills, and decrease self-stimulating/self-injurious behaviors seen in chil-
dren with ASD (Bass, Duchowny & Llabre, 2009; Dillon, Adams, Goudy, Bittner, &
Mcnamara, 2016; Sorensen & Zarrett, 2014).
Despite the numerous benefits of PA, children with ASD often do not meet PA
guidelines (Bandini et al., 2013) where it is recommended that all children achieve
60 minutes of daily, moderate to vigorous PA. To this end children with ASD are less
likely to be active, and participate in fewer activities compared to their age-related peers
(Bandini et al., 2013; Bassett, John, Conger, Fitzhugh, & Coe, 2015; Jones et al., 2017;
Pitchford, MacDonald, & Hauck, 2013). The combination of low PA participation
(Stanish et al., 2017), frequent participation in sedentary activities (Must et al., 2014),
biological determinants, weight gain associated with psychotropic medication
(Anagnostou, Aman, & Handen, 2016), (among others see Jachyra et al., 2018a) posi-
tions children with ASD to potentially develop acute and chronic health conditions
(Humphreys, McLeod, & Ruseski, 2014). Children with ASD are thus at a higher risk of
developing anxiety, depression, obesity, cardiovascular disease, and diabetes (Biddle &
Asare, 2011; Janssen & LeBlanc, 2010; MacDonald, Esposito, & Ulrich, 2011). Given the
numerous developmental, social and health benefits of PA, there is a need to better
understand how to enhance participation with this growing population of young people.
Research examining PA participation among children with ASD has highlighted sev-
eral environmental, systemic, and individual barriers that curtail their participation. At
the environmental level, children with ASD often experience challenges with social and
sensory overstimulation, can experience difficulty understanding rules and social cues,
and may struggle in team-based activities; all of which impedes their participation in
PA (Feehan et al., 2012). Systemic factors also influence PA participation. For example,
there often is a paucity of activity programs tailored to the needs of children with ASD
(Gregor et al., 2018), a lack of supports from service providers (Gregor et al., 2018),
and time constraints for caregivers (Must, Phillips, Curtin, & Bandini, 2015;
Obrusnikova & Miccinello, 2012). The combination of environmental and systemic fac-
tors intersect with individual barriers such as gross motor impairments, hypotonia,
reduced flexibility and postural instability (Green et al., 2009; Ozonoff et al., 2008).
Furthermore, it is not uncommon for children with ASD to exhibit atypical motor
development, demonstrate movement stereotypes, delays in achieving motor milestones,
repetitive motor movements, and dyspraxia (MacDonald et al., 2011; White, Oswald,
Ollendick, & Scahill, 2009). Somato-motor performance impairments in these areas in
turn contribute to delays in acquiring fundamental motor and movement skills often
required to participate in PA (Lloyd, MacDonald, & Lord, 2013). Increasing PA partici-
pation among children with ASD is thus a complex challenge that requires addressing
PHYSICAL & OCCUPATIONAL THERAPY IN PEDIATRICS 3
Methods
Study Design
A qualitative descriptive methodology (Jachyra, Atkinson & Bandiera, 2015; Green &
Thorogood, 2004) that employed face-to-face interviews was used. Descriptive research is
ideal for exploratory research and in particular is well suited for “areas that have been
under-researched, and are devoid of a robust empirical, conceptual, or substantive basis”
such as ours (Jachyra et al., 2018b, p. 1501). To this end, our qualitative descriptive design
enabled us to explore the meanings, ideas, and perceptions of the world that participants
attach to ASD, PA participation and the potential roles of PTs in working with this popu-
lation. Research ethics approval was obtained through the Research Ethics Board of the
children’s rehabilitation hospital where the study was conducted, and the University of
Toronto Health Sciences Research Ethics Board.
direct experience working with children with ASD were included to illuminate some of
the barriers, facilitators and mechanisms which enhance, shape and or curtail PTs
engagement in the care of children with ASD. Including PTs who had no direct experi-
ence also served as a valuable resource to identifying possible directions for expanding
PTs’ role in enhancing PA participation.
Although there are no standard rules for determining sample size in qualitative
research (Smith & McGannon, 2018), previous qualitative descriptive research interview-
ing parents and adolescents with ASD have ranged from two to ten participants. With 10
participants in our study, our analysis elicited the generation of common patterns, con-
sistency throughout the data, and establishment of primary themes (Hennink et al., 2017).
Data Generation
Qualitative data were generated through one-on-one, semi-structured, in-person inter-
views with 10 pediatric PTs (Figure 1). Participants had a range of experience working
with young people with ASD, with experience in brain injury and neuromuscular condi-
tions, and early childhood development. Interviews were conducted either at the
rehabilitation hospital (n = 8), or a private location of their choosing (n = 2) using an
interview guide that was developed based on the literature, and study objectives.
Interviews sought to facilitate discussion regarding: current practices working with chil-
dren with ASD; their related education and experience; whether they felt adequately
trained and/or confident working with children with ASD; and possible directions and
roles for physiotherapy in enhancing PA participation with children with ASD (see
Figure 2 for sample interview questions). Interviews were conducted between March
and June 2018 and ranged in length from 39 to 55 minutes. To maximize consistency of
data generation, one researcher conducted all of the interviews, and another researcher
was present to take field notes detailing tone, body language, and initial impressions.
Interviews were audio recorded, transcribed, and uploaded into NVIVO 10 for data
management and analysis. All participants were given pseudonyms and their interview
transcripts were de-identified to maintain confidentiality.
Analysis Procedures
Data were analyzed using thematically guided techniques described by Braun and
Clarke (2006). Interviews were transcribed, and reviewed by the interviewer to ensure
1. Do you have previous experience interacting with children who have been diagnosed with
Autism Spectrum Disorder?
Probes:
a. What have you heard about, or know about autism spectrum disorder?
b. Where did you learn about ASD?
c. Have you ever encountered anyone with ASD?
d. Are there particular experiences that influenced your perspectives on ASD?
2. Have you had any experiences in a clinical setting working with children and youth who
have Autism Spectrum Disorder?
Probes:
a. Quantity? Timeline? Diagnosis? Purpose (i.e Ax, Rx)?
b. How have you been focusing your therapy? (ASD symptoms, physical fitness,
other diagnoses?)
c. What strategies have you implemented when working with children who have
ASD (ie. communication)
d. What resources have you used to develop your approaches and strategies (eg
other programs that offer PT to kids with ASD?)
If no,
e. Can you describe any formal or informal education you’ve obtained on ASD
esp related to children and youth?
3. What are your thoughts on the role of PTs in the care of children with ASD?
Probes:
a. Benefits?
b. Drawbacks?
c. Barriers to PT?
d. Barriers to PA?
e. Do you feel like you have adequate training, confidence, and support to work
with kids with ASD?
f. Outside of direct clinical care, can you elaborate on some of the different
ways PT could facilitate physical activity with kids with ASD?
g. How can a physiotherapist impact health and well-being in this population
given that kids with ASD are positioned with mulit-morbidities?
If they want a definition to role:
- Health promotion
- Research
- Education
- Ax and Rx
- Exercise prescription
- Advocacy
accuracy of transcription. Each member of the research team reviewed the first two
interviews independently to generate initial impressions of the data, and independently
created codes (preliminary ideas about the data) using line-by-line coding. The team
then came together to review the initial codes, discuss emerging relationships, and
develop a flexible coding scheme that informed the subsequent analysis of the remain-
ing transcripts (Miles, Humberman, & Saldana, 2013). This iterative analytic process
was repeated during team meetings where data were discussed to map out commonal-
ities and explore interrelationships.
Once coding was finalized, coding reports detailing data excerpts for each code were
generated and reviewed by the team. Through a series of five analytic meetings, a the-
matic map was created to organize and explore patterns, connections, and relationships
between themes (Miles et al., 2013). The themes were descriptively labeled and partici-
pant quotes were used to support each theme. Throughout analysis, the team included
6 M. DUCK ET AL.
negative cases (i.e. outliers) which contradicted the developed plotline of the study find-
ings (Phoenix & Orr, 2017). Data analysis was considered complete when the main
theme and subthemes were identified, and all inconsistencies within the themes were
identified and resolved.
To ensure the conduct of high caliber qualitative research, procedural and analytical
rigor (Tracy, 2010) was established through: the diverse expertise of the research team
which included five physiotherapy students, and four advisors with expertise in qualita-
tive research, pediatric physiotherapy, occupational therapy, psychology, as well as
experience conducting ASD research; team immersion in the data; concurrent data gen-
eration and analysis; use of multiple coders; revision of transcript accuracy by the ori-
ginal interviewer, repeated group analysis meetings, and reflection of each team
members’ positionality in relation to the study.
Results
Our analyses generated three themes which collectively detail the complexities and chal-
lenges PTs experienced and/or envisaged working with children with ASD. Each of
these are described below. The first theme outlines the role of PT where participants’
primarily envisioned PTs working with children with ASD in a consultative capacity.
The second theme describes a perceived lack of PT expertise, confidence, and related
training. The final theme highlights the institutional, organizational and delivery chal-
lenges which shape PTs’ engagements with children with ASD.
A Consultative Role
Across the accounts, participants suggested that their knowledge, requisite skills, and
training could positively contribute to the care of children with ASD. Despite the gen-
eral lack of experience working with children with ASD among participants in this
study, participants noted the benefits of PTs assessing and supporting gross motor skill
development. They noted that improvements in physical skills such as gait, running,
jumping, and stair climbing which can be facilitated by PT could potentially enhance
children’s abilities to participate in PA participation with peers in both scholastic and
community contexts. For example, Mindy described the advantages of a “check in”
assessment early on in the child’s diagnosis:
I do think that it’s a good idea to have physio involvement early on, sort of a check-in. I
don’t think that every child with autism needs it but I think that maybe some of the more
severe ones would benefit from having a check-in early on to see they are developing those
habits or difficulties that might in the long run be a problem. We talk about the importance
of early intervention for children with autism, and their physical skills and challenges most
certainly should be involved in this discussion and clinical practice.
Participants did not see PTs routinely providing direct one-to-one therapy, but rather
envisioned a role for providing supportive care in the broader community. Supportive
care entailed educating and partnering with families, teachers and community service
providers regarding physical impairments experienced by some children with ASD,
strategies to enhance gross motor skill development, and how to facilitate PA at home,
PHYSICAL & OCCUPATIONAL THERAPY IN PEDIATRICS 7
their lack of confidence to gaps in their knowledge of ASD and management. They
identified the need for additional training and education, particularly increased familiar-
ization with behavioral issues, sensory integration, and management strategies as they
received little education about ASD during their formative physiotherapy training. Only
two participants had taken courses on sensory processing and ASD specific therapies,
however, this training was on their own accord, and beyond standard clinical physio-
therapy training they received. The overall lack of training in turn contributed to their
reticence to personally working with children with ASD, along with their hesitancy
regarding an expanded role for PTs without additional training, or continuing educa-
tion. Outlining the necessity to build on the minimal training they received while in
physiotherapy school regarding ASD, Veronica expressed:
I see the barrier in knowledge, there is very little that I learned on ASD when I was going to
school and so much has changed in terms of the spectrum now versus then, and the
diagnosis and treatments. I would think that definitely the knowledge needs to be increased
in terms of either in the school and as well in the community.
Not only participants express feelings of unease emanating from a lack of specific
training, another participant, Ruth, also noted that the evidence base regarding physio-
therapy and ASD is sparse. The sparseness of knowledge, along with the combination of
minimal training in ASD and limited clinical experience working with children with
ASD contributed to malaise in her own clinical practice. Ruth noted:
I think when it comes specifically to physio, it’s hard, like there is not really much out there
that’s very specific to physio and autism, there’s little research to say well this is the area that
can help, or this treatment approach, or this treatment technique. Throw that into the mix
with little experience and virtually no training, it’s a recipe for stressing out clinicians and
families alike.
The accounts thus suggested that participants were hesitant to recommend an
expanded role without ensuring that existing or future PTs were provided with ASD
specific education and training. Other challenges were also identified that were not spe-
cific to individual therapists, but rather to the broader systemic and structural mediators
of care programs and delivery. We discuss these below in our third and final theme.
I think what happens is, areas that are less traditional have difficulty finding funding and
getting on the funding bandwagon … The biggest bang for your buck is your inpatients
because you’re paid per admission. So kids with cerebral palsy are a high population for us
because they get orthopedic surgeries and therefore require PT intervention for both the
surgery and for CP. Since kids on the (autism) spectrum don’t meet traditional criteria for
physiotherapy care, they are rarely going to be patients.
In addition to these systemic barriers, participants noted that they perceived PA par-
ticipation to be of lower priority to both families and clinicians compared to other goals
and therapies. They described experiences wherein, families often valued behavior man-
agement, and communication therapies over PA and addressing more general physical
health needs. They noted that families have multiple demands placed on their time in
carrying out programs and advice from professionals. To this end, the benefits of poten-
tially facilitating PA were overshadowed by competing needs, demands, and priorities.
Highlighting these competing needs and interests, Archie put it this way:
I think over the years there’s sort of been a growing recognition by everyone working with
those kids that physio should be involved because at the beginning it was like, ‘oh those kids
have autism you don’t need to see them’ and ‘it’s a communication disorder’ or ‘a social
disorder’, but then what they’re seeing is actually, you know what, there’s some gross motor
stuff going on … The actual physical domain is one of their better areas, and it’s overlooked,
but yet, if you were to take this kid and put them in a gym group or put them in soccer,
they wouldn’t do well because they are very obviously behind their peers.
Recognizing the competing interests families may experience, participants expressed
hesitation in downloading more responsibilities onto families of children with ASD.
Despite the potential benefits of physiotherapy, participants were cognizant that add-
itional care from one more healthcare professional may strain some families who might
already be fully stretched with other clinical appointments and commitments. Given the
time, financial, and familial demands of raising a child with additional needs, partici-
pants expressed that they did not want to add to the stressors experienced by families.
In this vein, participants were cautious regarding PT’s role, and openly wondered who
else on the existing multidisciplinary team might promote and implement PA. Ginny in
the following passage suggested that adding PTs to the team may add to the burdens of
children and families with little value added:
Physiotherapy may not be as big of a priority as compared to some of the speech language or
the communication goals. Physiotherapy is something else that we’ve added on to their list of
things to do, adding to the caregiver burden. I wonder if adding us in to the mix contributes
more harm than good, but also recognize our potential value.
Another participant described these burdens in terms of “over-medicalization” of
activity and the child more broadly. The participant suggested that adding physiother-
apy to the care of children with ASD may lead to compartmentalizing the child’s body/
needs, turning activity into “therapy,” and providing too much care that focuses on spe-
cific impairments, further contributing to families’ burden. Highlighting the balancing
act of not placing additional undue family burden, Archie remarked:
For parents to have a therapist to continue medicalizing their child ‘here is another thing
wrong with your child’ I think that’s not something that’s the best use of our resources and
honestly, we may be placing unfair burden on the families in exposing them that way.
10 M. DUCK ET AL.
Despite the identified potential advantages of including PTs in the delivery of care
for children with ASD, the realities of funding structures, organization of PT care, and
the need to minimize burden on families were important considerations highlighted by
participants. Their narratives in turn demonstrate the complex challenges of enhancing
PA participation.
Discussion
To our knowledge, this is the first study to examine PTs perspectives and experiences
regarding a potential expanded PT role in promoting PA participation with children
with ASD. From engaging in a consultative role in clinical settings, to educating families
and service providers on how to enhance gross-motor skills and PA participation, par-
ticipants suggested that including PTs in the care of children with ASD has potential to
improve their health and wellbeing. Importantly however, PTs also described potential
challenges working with this population given the lack of PT training, research, and
education about ASD. Participants also expressed concern about potentially adding
more stress and burden to families by adding another clinical appointment and add-
itional home programing to the demands already imposed by other health professionals.
The challenges described by PTs were compounded by systemic barriers where address-
ing gross-motor issues with children with ASD did not fit within traditional conceptual-
izations of physiotherapy in this clinical setting. As such, participants were less likely to
assess or follow children with ASD. The findings of this preliminary study begin to map
out a possible way forward for further exploration of a PT role that considers the bar-
riers, challenges, risks, and benefits to implementation.
Our exploration of the role of PTs in PA participation and health promotion aligns
with physiotherapy’s professional mandate. Tasked with promoting PA participation,
health, and well-being of their patients (Canadian Physiotherapy Association, 2012), the
consultative role outlined by participants aligns with the broader mandate of PTs as
health advocates. Whether in the community or in a clinical setting, the Canadian
Physiotherapy Association’s position statement advocates that PTs are entrusted with
removing barriers to “physical activity in our social, physical, and cultural environ-
ments” (p. 2) in an effort to promote healthy lifestyles for all children. Despite their
role as health advocates seeking to enhance PA participation of children regardless of
ability (CPA, 2012), the individual and systemic barriers described above shaped and
restricted their engagement with children with ASD. Consistent with our findings,
Mieres et al. (2012) notes that PT predominantly continues to operate within traditional
PT clinical roles. In this vein, it is not uncommon for physiotherapists to have little for-
mative training and experience working with children with ASD, and even if they may
benefit from their care, they often are not served by PTs in both clinical and commu-
nity contexts (Colebourn et al., 2017). Yet as highlighted in our study, traditional con-
ceptualizations of PT can create missed opportunities for PT research, practice,
education and opportunities for collaboration to enhance PA participation among chil-
dren with ASD. As highlighted in our study, opportunities to collaborate with commu-
nity organizations and other professionals (such as recreation therapists) and
community coaches (see Townsend, Cushion & Smith, 2018) can be a valuable resource
to co-develop PA programs and opportunities that meet the needs and abilities of
PHYSICAL & OCCUPATIONAL THERAPY IN PEDIATRICS 11
children with ASD. Although there very well may be a more direct role for PTs working
with children with ASD, this may not be possible until there also are changes at sys-
temic levels governing care and influencing conceptualizations of PT. Moving beyond
clinical conceptualizations will require further research, development and training.
Despite the value of PTs potentially extending their role into the care of children
with ASD, study findings highlight how systemic barriers such as the organization of
therapy and services, along with how PA is valued by families are important factors that
need to be considered. As identified in the study findings, the organization of diagnostic
and treatment services for children with ASD predominantly focuses upon addressing
social and behavioral differences, with less emphasis on motor skills and motor coordin-
ation. As identified by PTs in this study and consistent with previous research, families
often tend to prioritize communication and social skills (Redquest, 2018). As well, our
previous work has shown that it is not uncommon for parents to prioritize them over
enhancing PA participation (Gregor et al., 2018). However, it is not uncommon for
children with ASD to experience motor delays (Lloyd et al., 2013), and these delays can
persist through childhood into adulthood (Bhat, Galloway, & Landa, 2012; Ozonoff
et al., 2008). Yet, this reticence toward PA participation at both a systemic and family
level is problematic as research increasingly suggests that PA participation can help
manage some symptoms and behaviors (Sorensen & Zarrett, 2014). Furthermore,
increases in gross-motor skills can contribute to increases in social skills (Holloway,
Long & Biasini, 2018), and better manual dexterity and motor coordination are related
to less social impairment in children with ASD (Hirata et al., 2014). In this vein,
enhancing motor coordination and motor skills may not only benefit PA participation,
but also translate to other aspects of daily living (combing hair, dressing, eating) where
Bremer and Cairney (2018) suggest that motor coordination and adaptive behavior are
positively correlated.
In light of emerging research highlighting the interrelationships between gross-motor
skills, communication skills, and activities of daily living, perhaps there is a need then
for broader cultural change regarding how we conceptualize, prioritize, and approach
PA among children with ASD. Rather than solely focusing on social and communica-
tion skills, approaching motor development, social, and communication skills as mutu-
ally interdependent and interconnected can reinforce the value and importance of PA
participation among children with ASD. Approaching children’s rehabilitation in this
way has the potential to help develop the “whole” person, and motor skills therefore we
argue should be a part of standard assessment and treatment planning for children with
ASD. Working to enhance both motor, social, and communication skills reinforce a
potential role for PTs, and other health professionals to potentially address social and
developmental domains through movement. We suggest that further research efforts are
needed to delineate the role of PT in enhancing PA participation of children with ASD.
Conclusion
In this study, we examined PTs’ perspectives and experiences of enhancing PA partici-
pation, and potentially being involved in the care of children with ASD. As the first
study in this area, our research highlights the potential consultative nature of PT, and
also elucidates the individual and systemic barriers which may prevent PTs from engag-
ing with children with ASD. This research is a point of departure to further examine
how to potentially enhance the PA participation of children with ASD by examining
how PTs can be potentially involved in their care.
Acknowledgments
This research was completed in partial fulfillment of the requirements for an MScPT degree at
the University of Toronto. We thank all the participants for their time and sharing their insights.
Disclosure statement
The authors report no conflict of interest. The authors alone are responsible for the content and
writing of this article.
ORCID
Laura Hartman https://orcid.org/0000-0001-7246-7863
Amy C McPherson http://orcid.org/0000-0003-4186-3200
Barbara E Gibson https://orcid.org/0000-0003-0429-8679
Patrick Jachyra https://orcid.org/0000-0003-3071-3178
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