Research Article

British Journal of Occupational Therapy

2020, Vol. 83(2) 78–87
Participation patterns of adolescents with ! The Author(s) 2019
Article reuse guidelines:
autism spectrum disorder compared to their sagepub.com/journals-permissions
DOI: 10.1177/0308022619853518
peers: Parents’ perspectives journals.sagepub.com/home/bjot

Liron Lamash1,2 , Gary Bedell1, Naomi Josman2

Abstract
Introduction: Although participation is an important outcome of rehabilitation interventions and a critical indicator of quality of
life, few studies have focused on the participation patterns of adolescents with autism spectrum disorder in their daily activities or
the environmental factors that influence such participation. This study aims to describe the participation characteristics of
adolescents with autism spectrum disorder compared with typically developing peers in home, school and community and to
identify supporting or hindering environmental features.
Method: The Participation and Environment Measure for Children and Youth was administered to 59 parents of adolescents
(M ¼ 14.51 years) with autism spectrum disorder and a control group of 188 parents of typically developing adolescents in Israel,
and the results were compared.
Results: Adolescents with autism spectrum disorder showed lower participation levels at home and school, and much lower
levels in the community, preferring solitary activities that involve technology. Their typically developing peers participated in more
activities that involved social interaction skill. In addition, parents of adolescents with autism spectrum disorder rated more
environmental factors as barriers in all environments.
Conclusion: Participation gaps between adolescents with autism spectrum disorder and their typically developing peers should be
considered when developing interventions, allocating services and creating policies to meet the unique needs of adolescents with
autism spectrum disorder.

Keywords
Autism spectrum disorder, adolescence, participation, environment, occupational therapy
Received 27 December 2018; accepted 8 May 2019

Introduction
Autism spectrum disorder (ASD) is a neurodevelopmen-
tal disorder characterized by deficits in social communi-
cation and social interaction across multiple contexts
(for example resulting from deficits in social-emotional
reciprocity, verbal and nonverbal communicative behav-
iours used for social interaction, and maintaining and
understanding relationships), as well as restricted, repet-
itive patterns of behaviour, interests or activities. The
daily functioning and social participation of individuals
with ASD are critical features when assessing impair-
ment severity and indicate overall health and wellbeing
(American Psychiatric Association (APA), 2013).
Adolescence challenges individuals with ASD as they
transition to independent adult life in everyday contexts
(Seltzer et al., 2003). Several studies showed that youth
with ASD tend to be increasingly isolated, with more
restricted independence, employment and higher educa-
tion than their typically developing (TD) peers (Liptak
et al., 2011; Shattuck et al., 2011).
The International Classification of Functioning,
Disability and Health: Children and Youth Version is
designed to document development characteristics,
ability to execute tasks or actions, and involvement in
life situations (World Health Organization (WHO),
2007). Its environmental factors include aspects of the
physical, sensory, social and attitudinal worlds, and it
defines participation as ‘involvement in a life situation’
or as ‘the lived experience’ of people in the context in
which they live, linked to activity and environmental
demands, and adequacy of resources (Bedell, 2012).
Participation has become an important outcome of reha-
bilitation interventions and a critical indicator of quality
of life (WHO, 2001).
Literature review
The majority of published studies that refer to partici-
pation among individuals with ASD address children
1
Occupational Therapy Department, Tufts University, MA, USA
2
Faculty of Social Welfare & Health Sciences, University of Haifa, Israel
Corresponding author:
Liron Lamash, University of Haifa, Abba Khoushy Ave 199, Haifa, 3498838,
Israel.
Email: Lironlamash@gmail.com
Lamash et al.
under the age of 12 years or mixed ages. Those that
focused on adolescents with ASD examined mainly
social participation and recreational activities. For
example, Potvin et al. (2013) compared the recreational
engagement of children with high functional autism and
their TD peers and indicated that children with autism
showed less diversity of participation than did their TD
peers and participated in significantly fewer physical
activities and pretend play. However, the authors
found no difference in the adolescents’ personal intensi-
ty, enjoyment or recreation preferences. Solish et al.
(2010) compared activity participation and friendship
in TD children, children with autism and children with
an intellectual disability between the ages of 5 and
17 years and indicated that children with autism partic-
ipated in significantly fewer social and recreational activ-
ities than did the TD and intellectual disability groups.
However, because it would be appropriate to expect
participation patterns among adolescents to differ from
participation among younger children, developing
knowledge of the adolescence period is very important.
The existing literature lacks reference to extensive par-
ticipation of adolescents with ASD in different environ-
ments or to the environmental factors that influence
participation, as the International Classification of
Functioning, Disability and Health for Children and
Youth (ICF-CY) (World Health Organization, 2007)
model recommends. Askari et al.’s (2015) scoping
review on participation of youth with ASD used exten-
sive systematic strategies to review evidence but found
few relevant articles, indicating that the existing knowl-
edge is limited and that few studies used objective meas-
ures of participation. Askari et al. recommended that
future research with adolescents with ASD use standard-
ized measures.
The Participation and Environment Measure for
Children and Youth (PEM-CY) is a unique standardized
assessment of participation in home, school and commu-
nity activities and of environmental factors that influ-
ence such participation (Coster et al., 2011). The
PEM-CY’s strength – presentation of those patterns
and factors in various contexts – adds important infor-
mation to studies with children and youth with develop-
mental and acquired disabilities (Bedell et al., 2013;
Coster et al., 2013; Khetani et al., 2014). The value of
using the PEM-CY to characterize the participation pat-
terns of adolescents with ASD is that it adds reference to
the environmental determinants of participation impor-
tant for developing effective interventions.
Studies that have used the PEM-CY to compare par-
ticipation of children and youth with ASD to their TD
peers included exclusively younger children or mixed-age
samples, or focused on only one setting among home,
school or community (see for example Bedell et al., 2013;
Coster et al., 2013; Egilson et al., 2017; Law et al., 2013;
Simpson et al., 2018). Thus, they did not fully utilize the
PEM-CY to capture adolescent age-specific characteris-
tics or the overall picture of participation of adolescents
with ASD across settings.
79
Given the increasing demand for improved transition
programming for adolescents with disabilities, this
study’s aims were to compare participation patterns of
adolescents with ASD to their TD peers in home, school
and community settings using the PEM-CY. An addi-
tional study goal was to identify environmental features
and resources that support or hinder participation of
adolescents with ASD in those settings.
Method
Participants
In Israel, most educational and clinical services (such as
occupational therapy and speech therapy) for children
and adolescents with special needs are provided in their
educational environment, under the supervision of the
Ministry of Education. As such, we recruited a conve-
nience sample of participants through the Israeli educa-
tional system. It consisted of 245 adolescents between
the ages of 11 and 19 years (M ¼ 14.51, SD ¼ 1.54).
The ASD group consisted of 59 adolescents (M ¼ 14.51
years, SD ¼ 1.54; 49 boys and 10 girls). The group’s
gender demographic generally parallels the male-to-
female ratio in high functioning ASD adolescents,
which typically converges at approximately 4:1 or 5:1
(Bishop et al., 2016). All participants attended seventh-
to twelfth-grade classes at six mainstream secondary
schools. The group with ASD attended classes designed
specifically for students with ASD but within the main-
stream system. Their primary teachers provided a file
with an updated diagnosis of ASD and IQ scores.
Only participants with recorded average or above-
average IQs were included in the ASD group. The TD
group consisted of 188 adolescents (M ¼ 14.76 years,
SD ¼ 1.88; 79 boys and 109 girls). We excluded partic-
ipants with significant physical or mental health condi-
tions that might limit their movements, senses or
activities (and therefore, participation) during the
research period.
Measures
Data were collected using a demographic questionnaire
and the PEM-CY, which the parents completed. The
demographic questionnaire provided information, such
as age, gender, socioeconomic status (relative to the
Israeli national average wage), parent education (high
school or less, professional training, academic gradua-
tion) and residence type (rural or urban), about the ado-
lescents and their families.
According to the manual, the PEM-CY was devel-
oped and tested as a parental report measure, and
there is no self-reported version for adolescents. The
PEM-CY is a parental reporting questionnaire that
measures participation patterns of children and adoles-
cents aged 5 to 17 years in home, school and community
settings, and the extent to which they perceive
80
environmental features as supporting or impeding the
children’s participation.
The PEM-CY participation section includes 25 ques-
tions (10 for home, 10 for community and 5 for school),
and the environment section includes 45 questions (12
for home, 17 for school and 16 for community). For
each participation item, the parent was asked to rate
the frequency with which the adolescent participated in
the activities (never ¼ 0; daily ¼ 7), how involved the
adolescent is when doing these activities in terms of
the level of attention, concentration, emotional engage-
ment or satisfaction (minimally involved ¼ 1; very
involved ¼ 5), and whether the parent desired some
type of change (yes/no, and the type of change desired:
frequency, involvement or variety). However, for the
purposes of this study, we examined only participation
frequency and extent of involvement.
Within each environment (home, school and commu-
nity), the parents reported whether various environmen-
tal features affected their children’s participation. Some
items asked about the extent of the feature’s helpfulness
(usually makes harder ¼ 1, sometimes helps, sometimes
makes harder ¼ 2 and usually helps or not an issue ¼ 3).
Others asked about the availability of environmental
resources (usually no ¼ 1, sometimes yes, sometimes
no ¼ 2 and usually yes or not needed ¼ 3). The environ-
mental summary score for each setting was the sum of all
item ratings based on PEM-CY scoring guidelines
(Coster et al., 2011).
The PEM-CY’s internal consistency is moderate to
good for participation frequency (a ¼ 0.59–0.70), partic-
ipation involvement (a ¼ 0.72–0.83) and environmental
supportiveness (a ¼ 0.67–0.91). Test–retest reliability has
been reported as moderate to good for all participation
and environment summary scores with interclass corre-
lations (ICC) from 0.58 to 0.95, and across items within
the home, school and community sections of the instru-
ment (ICC ¼ 0.68–0.96) (Khetani et al., 2014). For the
purposes of this study, the PEM-CY was cross-culturally
translated into Hebrew using forward and backward
translation and reviewed by an expert committee. No
changes were made to the PEM-CY items’ content or
form except for a few cultural adjustments of the sam-
ples approved by the authors. All participants completed
the Hebrew version. Cronbach’s alpha results exhibited
an alpha coefficient of .75 in the total frequency score,
.89 in the total involvement score and .87 in the total
environment score of the PEM-CY. Those results indi-
cate the high internal consistency and reliability of the
PEM-CY Hebrew version.
Data collection and analysis
The ethics committee of the academic institution and the
Chief Science Office, Israeli Ministry of Education,
approved this study. All participants who met the inclu-
sion criteria and their parents signed informed consent
forms and completed the demographic questionnaire
and PEM-CY.
British Journal of Occupational Therapy 83(2)
Data analyses were conducted using SPSS version
21.0. Descriptive statistics included frequencies, means
and standard deviations for demographics and for
item- and summary-level PEM-CY scores. One-way
ANCOVA with Bonferroni correction (p < .001) was
conducted to examine the PEM-CY summary scores dif-
ferences between groups, controlling for gender.
Independent-sample t-tests with Bonferroni correction
(p < .01) and chi-squared tests were conducted to exam-
ine the PEM-CY item differences between groups.
Levene’s test for equality of variances was conducted,
and degrees of freedom were adjusted for unequal var-
iances. In addition, the weighted effect size was calculat-
ed by Cramer’s phi (u) for chi-squared tests. An u of
.1 was considered a small effect, .3 a medium effect and
.5 or higher a large effect. The Hedges’ g effect size was
calculated for t-test comparisons of groups with differ-
ent sample sizes (Ellis, 2010; Hedges and Olkin, 1985).
A Hedges’ g of .2 was considered a small effect, .5 a
medium effect and .8 or higher a large effect.
Results
Participant patterns
No significant differences were found between groups
for age, socioeconomic status or residence type.
However, a significant difference was found in gender
composition (v2(1) ¼ 30.28, p < .001, g ¼ .35), as
expected, given that the percentage of girls in the
group of TD adolescents was significantly higher than
in the ASD group (58% vs. 16.9%). The TD group also
included a higher percentage of participants who
reported practising religion (v2(1) ¼ 160.86, p < .001,
g ¼ .74) (Table 1).
Differences between adolescents with ASD and
TD adolescents
Descriptive statistics for the PEM-CY summary scores
highlight differences between the adolescents with ASD
and their TD peers in each setting (home, school and
community), including participation frequency, involve-
ment levels and environmental impacts. As the PEM-CY
questionnaire authors recommended, we used radar
charts to present the percentage of parents who defined
items as inhibiting participation in each setting (Coster
et al., 2011). Following examination of differences in
ratios between boys and girls in both groups, we exam-
ined gender differences in participation patterns within
each group. There was no difference between boys and
girls in participation frequency or involvement level in
either group. Therefore, the data analysis continued to
relate to the two groups regardless of the gender
composition.
Home environment: participation frequency. No significant
difference was found in participation-frequency summa-
ry scores between adolescents with ASD and TD
Lamash et al. 81

Table 1. Demographic characteristics of groups. Home environment: environmental impacts. Significant

Adolescents with ASD TD adolescents
differences were found between the groups in the home
(N ¼ 59) (N ¼ 188) environmental summary score after controlling for
gender (F(1,244) ¼ 19.06, p < .001, g2p ¼ .07). Parents of
Variable n % n % adolescents with ASD perceived the total home environ-
Gender mental patterns as less supportive of participation than
Male 49 83.1 79 42.0 did parents of the TD adolescents. Figure 1 presents
Female 10 16.9 109 58.0 group differences by percentage of parents who identi-
Grade fied home environment features as inhibiting home
Middle school 41 74.6 111 59.0
High school 18 25.4 77 41.0
participation.
Religiosity
Secular 57 96.6 20 10.7 School environment: participation frequency. No signifi-
Religious 2 3.4 168 89.3 cant difference was found between the group with
Socioeconomic status ASD and the TD group in school participation-
High 27 45.8 79 42.0
Average 24 40.7 94 46.4
frequency summary scores. However, compared to the
Low 6 10.1 15 8.0 TD group, the adolescents with ASD participated signif-
Missing data 2 3.4 - - icantly less often in getting together with peers outside of
Type of residence class (t(230,53) ¼ 2.79, p < .01, 95% CI [0.24, 0.91],
Urban area 47 79.6 158 84.0 g ¼ .57) and school-sponsored teams, clubs and organiza-
Suburban/rural 12 20.4 30 16.0
Father education
tions (t(230,72) ¼ 1.98, p < .05, 95% CI [0.00,
High school or less 11 18.6 70 37.2 0.66], g ¼ .33).
Professional training 9 15.2 36 19.1
Academic education 34 57.6 82 43.6 School environment: involvement level. A significant dif-
Missing data 4 8.6 - - ference was found between groups in the involvement
Mother education
High school or less 7 11.9 17 9.0
summary score after controlling for gender (F(1,229) ¼
Professional training 11 18.6 60 31.9 6.36, p < .01, g2p ¼ .03). Item-level analysis indicated ado-
Academic education 39 66.1 111 59.0 lescents with ASD were significantly less involved in get-
Missing data 2 3.4 - - ting together with peers outside of class (t(230,62) ¼
ASD: autism spectrum disorder; TD: typically developing. 4.36, p < .001, 95% CI [0.43, 1.10], g ¼ .76), activities
of field trips and school events (t(230,74) ¼ 2.56, p < .05,
95% CI [0.12, 0.79], g ¼ .45) and school-sponsored teams,
adolescents. However, significant differences were found clubs and organizations (t(230,76) ¼ 2.87, p < .01, 95%
between groups in five participation-frequency items in CI [0.10, 0.76], g ¼ .43) than were their TD peers.
the home environment. Compared to the TD adoles-
cents, those with ASD participated significantly more School environment: environmental impacts. Significant
often in playing computer and video games (t(244,211) ¼ differences were found between groups in school envi-
–11.68, p < .001, 95% CI [0.92, 1.54], g ¼ 1.23) and watch- ronmental summary scores after controlling for gender
ing TV, videos and DVDs (t(245,203) ¼ –10.68, p < .001, (F(1,229) ¼ 6.33, p < .01, g2p ¼ .03). School environment
95% CI [0.82, 1.44], g ¼ 1.12), and significantly less often was perceived as less supportive for adolescents with
in taking part in household chores (t(245,87) ¼ 2.96, p < .01, ASD participation than for TD adolescents. Figure 2
95% CI [0.18, 0.78], g ¼ .48), doing homework (t(245,76) ¼ presents the group differences by percentage of school
4.01, p < .001, 95% CI [0.42, 1.02], g ¼ .72) and getting environmental features that were identified as inhibiting
together with other people (t(245,103) ¼ 2.95, p < .01, 95% school participation.
CI [0.14, 0.74], g ¼ .44).
Community environment: participation frequency. A signif-
icant difference was found between groups in the com-
Home environment: involvement level. No significant dif-
munity participation-frequency summary score after
ference was found in the extent of involvement summary
controlling for gender (F(1,244) ¼ 54.00, p < .001,
scores, but significant differences were found in four
g2p ¼ .18). The adolescents with ASD participated signif-
home participation-involvement items. The adolescents icantly less often in eight community activities. Medium
with ASD were significantly more involved in playing and high effect sizes were found in religious or spiritual
computer and video games (t(245,179) ¼ –7.82, p < .001, gatherings (t(245,91) ¼ 10.29, p < .001, 95% CI [0.93,
95% CI [0.58, 1.18], g ¼ .88) and watching TV, videos and 1.55], g ¼ 1.24), working for pay (t(245,91) ¼ 13.35,
DVDs (t(244,183) ¼ –6.02, p < .001, 95% CI [0.38, 0.97], p < .001, 95% CI [0.90, 1.52], g ¼ 1.21), getting together
g ¼ .67), and significantly less in getting together with with other children (t(245,91) ¼ 7.2, p < .001, 95% CI
other people (t(245,104) ¼ –3.67, p < .001, 95% CI [0.76, 1.38], g ¼ 1.07), neighbourhood outings (t
[0.23, 0.83], g ¼ .53) and doing homework (t(245,88) ¼ (245,91) ¼ 4.63, p < .001, 95% CI [0.39, 0.99], g ¼ .69)
2.12, p < .05, 95% CI [0.04, 0.62], g ¼ .33) than their and overnight visits or trips (t(245,91) ¼ 3.53, p < .001,
TD peers. 95% CI [0.23, 0.82], g ¼ .53).
82 British Journal of Occupational Therapy 83(2)

Figure 1. Group differences in home environment items.

ASD: autism spectrum disorder; TD: typically developing.

Figure 2. Group differences in school environment items.

ASD: autism spectrum disorder; TD: typically developing.
Lamash et al.
Community environment: involvement level. A significant
difference was found in the community involvement
summary score between adolescents with and without
ASD after controlling for gender (F(1,244) ¼ 38.42,
p < .001, g2p ¼ .14). Significant differences were noted in
the same items the adolescents with ASD performed less
frequently. Of these, items with the highest effect sizes
were working for pay (t(245,155) ¼ 12.54, p < .001, 95%
CI [0.97, 1.59], g ¼ 1.28), religious or spiritual gatherings
(t(245,91) ¼ 7.58, p < .001, 95% CI [0.82, 1.44], g ¼ 1.12),
getting together with other children (t(245,91) ¼ 6.76,
p < .001, 95% CI [0.70, 1.31], g ¼ 1.00), overnight visits
or trips (t(245,90) ¼ 5.20, p < .001, 95% CI [0.51, 1.11],
g ¼ .81) and neighbourhood outings (t(245,89) ¼ 3.47,
p < .010, 95% CI [0.22, 0.81], g ¼ .51).
Community environment: environmental impacts.
Significant differences were found between groups in
community environmental summary scores after con-
trolling for gender (F(1,241) ¼ 36.36, p < .001, g2p ¼ .13).
Parents of the adolescents with ASD perceived the com-
munity environment as less supportive of participation
than did parents of TD adolescents. Figure 3 presents
differences between the groups’ percentage of parents
who reported community environmental features as
inhibiting their children’s community participation.
Figure 3. Group differences in community environment items.
ASD: autism spectrum disorder; TD: typically developing.
83
Discussion and implications
Participation patterns
This study’s findings identify participation patterns of
adolescents with ASD across home, school and com-
munity settings compared to their TD peers. Overall,
adolescents with ASD had total participation levels
similar to their TD peers at home (with differences in
the type of activities performed) but relatively lower
levels in some school activities and much lower levels
in the community in terms of frequency and
involvement.
Major differences between the groups in home par-
ticipation were in activity preferences. Adolescents with
ASD reported spending more time using technology (TV
and videos), whereas TD adolescents spent more time
involved in social and academic activities. The literature
has consistently reported the tendency of individuals
with ASD to engage in discretionary solitary activities
involving technology (Potvin et al., 2013; Shattuck et al.,
2011). In the home environment, adolescents with ASD
participated less frequently and with lower involvement
levels in getting together with people, household chores
and school preparation, similar to other studies that
reported PEM-CY scores for children with ASD in
those activities (see for example Egilson et al., 2017).
84
They suggested that, unlike TD children, meeting friends
requires great effort from family members of children
with ASD to collaborate and prepare the child in
advance, causing the family to be more selective of
social activities, which may lead to lower participation
frequency. In addition, according to Hampshire et al.
(2016), homework challenges are common for students
with autism spectrum disorders who demonstrate diffi-
culty developing effective study habits and frequently
need adult involvement to handle academic skills. This
reinforces the findings of the low frequency of in-home
academic activity among the adolescents with ASD in
the current study. At school, the participation frequency
of adolescents with ASD did not significantly differ from
their TD peers in classroom activities, despite the lower
involvement levels. However, it was notable that in
school-wide activities outside their usual classrooms
(such as field trips or school events), adolescents with
ASD participated significantly less often and were less
involved. Outside the familiar ASD-targeted classes
adapted to their needs, less familiar and less predictable
activities were likely more challenging to navigate and
thus harder to adapt to individual needs and preferences
(Bogdashina, 2016). Another explanation may relate to
the sensory diversity or unusual interest in environmental
sensory aspects frequently noted in this population (APA,
2013) and presented in the literature as a significant factor
influencing their capacity to participate in daily activities
(Ben-Sasson et al., 2009; Little et al., 2014; O’Donnell
et al., 2012).
These findings highlight that adolescents with ASD
had higher participation and involvement when activities
involved them with peers with ASD (for example class-
room activities) than when activities involved them with
TD adolescents (for example getting together with peers
outside the classroom), perhaps related to their social
preferences. These results support studies that indicated
children with ASD usually prefer spending time with
other children with ASD or with other disabilities over
spending time with TD children (see for example Locke
et al., 2010).
In the community environment, the groups differed
significantly in all activities except community events
(less prevalent for both groups), classes and lessons.
Other studies have reported similar low levels of commu-
nity and social participation of adolescents with ASD
compared to adolescents with other disabilities, such as
learning disabilities or speech and language impairments,
and to TD adolescents (see for example Levine et al.,
2007; Shattuck et al., 2011). The National Longitudinal
Transition Study 2, an in-depth look at life in non-school
hours for youth (13–17 years) with disabilities (for exam-
ple deafness, blindness, mental retardation and traumatic
brain injury) based on parent reports, also presented sim-
ilar findings. For example, youth with ASD contacted
friends, spent time outdoors, played sports or worked
for pay less frequently than did youth with other disabil-
ities (Wagner et al., 2003).
British Journal of Occupational Therapy 83(2)
Environment
Overall, parents of adolescents with ASD rated environ-
mental factors as barriers more often than did parents of
TD adolescents, similar to findings in studies with pop-
ulations with other disabilities (see for example Anaby
et al., 2014; Bedell et al., 2013; Law et al., 2013).
Cognitive demands (such as concentration, attention,
problem-solving), social demands (such as communica-
tion, interacting with others), sensory demands (such as
noise, crowds, lighting) and physical activity demands
(such as strength, endurance, coordination) were the
most-reported environmental barriers for adolescents
with ASD, similar to Bedell et al.’s (2013) study, which
examined community participation of school-age chil-
dren with a wide range of disabling conditions.
We expected social demands and peer relationships
across settings to be participation barriers for adoles-
cents with ASD, given that the extant literature identi-
fied social and communication deficits as core
impairments in ASD (see for example Shattuck et al.,
2011; Taheri et al., 2016). We also expected sensory fea-
tures to be reported as major participation barriers
because different sensory experiences are common in
ASD (APA, 2013). For example, higher overall rates
of atypical sensory experience were consistently reported
in children with autism compared to TD children
(Ben-Sasson et al., 2009; McCormick et al., 2016).
Moreover, the APA’s (2013) most recent diagnostic revi-
sion includes sensory processing challenges as a key fea-
ture of ASD and a significant barrier to social
interactions and relationships, given the range and
unpredictability of sensory experiences in these activi-
ties. However, despite the extensive literature on cogni-
tive and metacognitive impairments among individuals
with ASD characterized by deficient planning, flexibility
and behaviour regulation, such as Panerai et al.’s (2016)
research, surprisingly few studies indicated similar find-
ings to ours, linking cognitive factors to participation in
home, school or community life (Hill, 2004; Lamash
et al., 2017; Pugliese et al., 2015). In our study, cognitive
activity demands were rated as major participation bar-
riers for adolescents with ASD across all three settings,
and adolescents with ASD, all reportedly of normal
intelligence, had significantly greater problems with cog-
nitive activity demands compared to TD peers.
Furthermore, few preliminary studies focused on
improving executive functions to improve daily activities
performance and increase participation in individuals
with ASD (see for example Goodman et al., 2017;
Lamash et al., 2017). Our results underscore the need
for further research into the effects of cognitive and
metacognitive functions to inform strategies and inter-
ventions to promote participation.
In this study, most parents did not describe inade-
quate or lack of financial resources as a participation
barrier. Of the few who did, most were parents of ado-
lescents with ASD. Myers et al. (2015) found adequate
resources (such as services, transportation and supplies)
Lamash et al.
to be significantly associated with the social participa-
tion of individuals with ASD, and family household
income significantly associated with community partici-
pation. Raising a child with ASD usually requires addi-
tional costs for clinical and intervention services,
specialized services, treatments and lost family wages
(Grasu, 2015). Although a majority of the parents in
this sample did not describe inadequate financial resour-
ces as participation barriers, these factors must be con-
sidered in intervention planning and policy-making for
adolescents with ASD and their families.
Limitations
This study focused on adolescents with ASD who attend
ASD-designated classes in mainstream schools. Further
research should assess participation patterns of adoles-
cents with ASD who attend mainstream classes. Also,
the PEM-CY was developed and designed as a parental
report questionnaire; therefore, the findings of the cur-
rent study are based on parent-only perspectives. Future
research that includes adolescent perspectives and solic-
its feedback from other stakeholders would broaden
understanding of the adolescents’ needs and preferences
and inform services, interventions and policies to pro-
mote their participation. Finally, collecting data via con-
venience sampling led to differences in
sociodemographic variables. Results cannot be general-
ized beyond this sample, and we recommend further
research with a larger, more representative sample and
matched control group.
Conclusion and implications
Most of our results are consistent with previous studies
and indicate that adolescents with ASD have significant-
ly lower participation (involvement and frequency) than
do their TD peers. However, this study uniquely high-
lights the importance of specific activity demands on
participation. The most frequently cited participation
barriers – sensory, cognitive and social-activity demands
– suggest interventions could effectively combine cogni-
tive and social problem-solving methods to enhance
school and community participation. Finally, these find-
ings extend knowledge important to allocating services
and creating policies to meet the unique needs of ado-
lescents with ASD.
Key findings
• Adolescents with autism spectrum disorder (ASD)
participate in more solitary activities that involve
technology, whereas typically developing adolescents
participate in more social and academic activities.
• Parents of adolescents with ASD rated cognitive,
social, sensory and physical activity demands as the
most-reported environmental barriers for adolescents
with ASD.
85
What the study has added
This study describes the participation patterns of
adolescents with ASD and the environmental factors
that hinder their participation. Social, sensory and
cognitive factors were rated as the main barriers.
Acknowledgements
We thank Hadas Shahaf for being part of this research group
during her M.Sc. studies in occupational therapy, University of
Haifa. We also thank the graduates of the Occupational Therapy
Mivchar Program of the University of Haifa who helped with
data collection.
Research ethics
This study was approved by the Faculty of Social Welfare and
Health Sciences, University of Haifa ethics committee (approval
numbers 104/14, 308/15) and the Israeli Chief Science Office in
the Ministry of Education (2014).
Consent
All potential participants who met the inclusion criteria and their
parents signed consent forms and were informed of the study’s risks
and benefits, that their participation was voluntary and that their
identity would not be disclosed. All data were handled anonymous-
ly by serial numbers and stored in a secured closet accessible to only
the principal investigator.
Declaration of conflicting interests
The authors declared no potential conflicts of interest with respect
to the research, authorship and/or publication of this article.
Funding
The authors received no financial support for the research, author-
ship and/or publication of this article.
Contributorship
Liron Lamash researched literature, applied for ethical approval,
collected the data and carried out the statistical analysis, and wrote
the manuscript.
All authors contributed to the methodology of the project,
interpreted the data, and reviewed and approved the final version.
ORCID iD
Liron Lamash https://orcid.org/0000-0001-8241-348X
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