PLOS ONE

RESEARCH ARTICLE

Transition preparation activities among

families of youth on the autism spectrum:
Preliminary study using repeated
assessments across a school year
Anne V. Kirby ID1*, Marissa L. Diener2, Daniel E. Adkins3,4, Cheryl Wright2

1 Department of Occupational and Recreational Therapies, College of Health, University of Utah, Salt Lake
City, UT, United States of America, 2 Department of Family and Consumer Studies, College of Social and
Behavioral Science, University of Utah, Salt Lake City, UT, United States of America, 3 Department of
a1111111111 Sociology, College of Social and Behavioral Science, University of Utah, Salt Lake City, UT, United States of
a1111111111 America, 4 Department of Psychiatry, School of Medicine, University of Utah, Salt Lake City, UT, United
a1111111111 States of America
a1111111111
a1111111111 * [email protected]

Abstract
OPEN ACCESS Much is still unknown about the transition to adulthood for youth with autism spectrum disor-
Citation: Kirby AV, Diener ML, Adkins DE, Wright C der (ASD), including what preparation activities best support positive adult outcomes.
(2020) Transition preparation activities among Parents play a crucial role in the transition planning and preparation process, yet the existing
families of youth on the autism spectrum:
literature lacks detailed information about parent perceptions about transition preparation
Preliminary study using repeated assessments
across a school year. PLoS ONE 15(4): e0231551. activities. To examine family transition preparation activities, we conducted a ten-month
https://doi.org/10.1371/journal.pone.0231551 study of the transition preparation process of 15 families of youth with ASD across an aca-
Editor: Amanda A. Webster, University of demic year. Youth were ages 14–17 and 93% male. We collected data on transition prepa-
Wollongong, AUSTRALIA ration activity time spent and parent satisfaction over twenty data collection points. We used
Received: October 25, 2019 multi-level modeling to determine longitudinal trajectories of parent-reported preparation for
the transition to adulthood based on endorsed transition preparation activities. Findings
Accepted: March 25, 2020
from this preliminary study revealed that discussions about the future were the most com-
Published: April 16, 2020
monly endorsed activities, while social activities were most associated with increased
Copyright: © 2020 Kirby et al. This is an open parental perception of transition preparation over time. This study expands understanding of
access article distributed under the terms of the
various transition preparation activities engaged in by families of youth with ASD during high
Creative Commons Attribution License, which
permits unrestricted use, distribution, and school, though research with a larger and more diverse sample is needed to extend
reproduction in any medium, provided the original findings.
author and source are credited.

Data Availability Statement: Data are available via

the Center for Open Science. Available here: https://
osf.io/mnfjy/?view_only=
9e7863569f1a4799864feddb6ae27aab.

Funding: This project was financially supported by Introduction

a grant from the University of Utah College of
Autism spectrum disorder (ASD) is a neurodevelopmental condition that affects an estimated
Health (https://health.utah.edu/) [AK]. The funder
had no role in study design, data collection and
1 in 59 children in the United States [1]. The core features of the diagnosis of ASD include
analysis, decision to publish, or preparation of the social and communication challenges, accompanied by restricted and repetitive behaviors [2].
manuscript. Despite emphasis on ASD as a childhood disorder, these symptoms persist through

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PLOS ONE AUTISM TRANSITION SHORT REPORT

Competing interests: The authors have declared adolescence and adulthood, impacting individual and family functioning at all stages of life
that no competing interests exist. [3,4]. In particular, the transition to adulthood is known to be a challenging period for individ-
uals with ASD [5]. During adolescence, many families report feeling unprepared for the transi-
tion and uncertain of how to support their child to ensure post-secondary success [6,7].
Fittingly, the exit from high school has been likened to “falling off a cliff” for individuals with
ASD because of the drastic reduction of supports and services during this time [4,8].
Existing data on post-school outcomes in the US and in other countries (e.g., [9–11]) point
to the need for improving transition preparation to facilitate successful transitions to adult-
hood that align with the priorities of youth and families. Employment rates are low and when
individuals with ASD do work it is often for low hours and wages [12,13]. Participation in
post-secondary education is also relatively low [14]. In fact, a national study found that over
50% of youth with ASD had no participation in education or employment during their first
two years out of high school [15]. Few individuals with ASD live on their own after high
school, with large studies suggesting that most adults with ASD continue to reside with their
parents [16,17]. Studies suggest that individuals with ASD who have average or above-average
cognitive levels (i.e., ASD without intellectual disability [ID]) are particularly at risk during the
transition to adulthood, and face significant challenges as adults [16]. Despite their cognitive
abilities, they are frequently un- or under-employed and lack skills to live independently,
meanwhile receiving fewer supports and services than individuals with ID [16]. One reason
for this discrepancy may be that youth with ASD without ID are often working toward a high
school diploma and taking general education classes, while those with ID may be spending
more time in special education and/or life skills focused classes [5,18].
The important role of parents during the transition process is clear. Yet, evidence suggests
that while parents of youth with ASD often have high hopes for the future, they are often
uncertain about how to help their youth attain their ideal post-school goals and do not feel
supported in this process [19–22]. Despite their uncertainty, however, parents of youth with
ASD play an important role in the transition process and often feel transition planning is pri-
marily their responsibility [23]. Parents are highly involved in the day-to-day practices of plan-
ning and preparing for adulthood for youth with ASD [7]. Furthermore, certain activities
allocated by parents, such as chores, have been shown to positively predict to post-school out-
comes like employment [12]. Studies have also shown that parent expectations significantly
predict transition preparation activities and post-school independence among youth with
ASD [24,25]. However, little is known about which transition preparation activities parents
find most helpful in the process. Though one study did find that parents of youth with ASD
were unlikely to report that the transition planning provided through the school system was
helpful [26].
Most studies on transition either collect cross-sectional data at a single time point—which
miss changes over time—or collect longitudinal data with years between data collection—
which may make it challenging to understand influences on changes. The period leading up to
the transition to adulthood can be quite turbulent with many changes across a single year;
however, these changes are not well understood in the existing literature. To begin to address
this gap, we conducted a preliminary in-depth study of transition preparation activities as
reported by parents of youth with ASD at multiple time points across a single academic year
with a small sample. In this brief report, we address the following research questions: (1) What
transition-related activities were youth with ASD and their parents most commonly engaged
in throughout the course of a high school academic year, and how satisfied were parents with
each activity? and (2) How did parent-reported preparedness for transition vary during the
school year when accounting for transition activity endorsement over time?

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Methods
For this study, we collected data over the course of an academic year from parents of youth
with ASD. The University of Utah Institutional Review Board (IRB) approved all study
procedures.

Participants
Parents of 15 adolescents with ASD participated in the portion of this study described here;
adolescents also completed some assessments and a qualitative interview. We recruited a vol-
unteer sample of participants through listservs of Utah-based organizations for parents of
youth with disabilities/ASD, at specialty schools, and at local clinics that provide services to
this population. To be included, parents needed to report at enrollment that their 14–17 year-
old child had received an autism diagnosis from a qualified provider and was anticipating a
high school diploma (vs. completion certificate). One parent was a father and the rest were
mothers. Youth and family descriptive information is located in Table 1. As is common
among youth with ASD, most participants had co-occurring health conditions including anxi-
ety (N = 6) and attention-deficit/hyperactivity disorder (N = 8), among others. No participants
had a diagnosis of intellectual disability, which is likely due to our requirement that they be
anticipating receipt of a diploma. Parents consented and youth assented (because of age) to
participation in the study—during this process, a member of the research team provided IRB-
approved documents and verbal overview of the study to the parent and youth together and
invited them to ask questions.

Table 1. Participant characteristics.

Youth and Family Characteristics N (%)
Youth Age: M(SD) 15.5(0.9) years [range: 14–17]
Youth Gender
Male 14 (93%)
Female 1 (7%)
Youth Race: White 15 (100%)
Youth Ethnicity: Hispanic 2 (13%)
Annual Household Income
>$29,999 1 (7%)
$30,000 - $79,999 2 (13%)
$80,000 - $149,999 8 (53%)
�$150,000 4 (27%)
SRS-2 Autism Severity
Did not meet ASD cut-off� 4 (27%)
Mild ASD 4 (27%)
Moderate ASD 5 (33%)
Severe ASD 2 (13%)
WASI-II IQ Score: M (SD) 110.8(15.6) [range: 72–139]

SRS-2, Social Responsiveness Scale, Second Edition. ASD, autism spectrum disorder.
�
, SRS-2 T-scores of �59 are considered within normal limits, however, the manual states “individuals with very mild
autistic syndromes may show scores in the upper end of the normal range if they are well adjusted and their adaptive
functioning is relatively intact” [26]. All 4 who did not meet for ASD had scores within six T-score points of the cut-
off (scores: 53–57).

https://doi.org/10.1371/journal.pone.0231551.t001

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Data collection
Data collection occurred at multiple time points. First, parent and youth participants com-
pleted an in-person study visit either at the university or their home before the start of the aca-
demic year (i.e., July or August). Initial data collection included an assessment battery with
parents and youth including the Social Responsiveness Scale, Second Edition (SRS-2; [27]),
and the two-subtest version of the Wechsler Abbreviated Scale of Intelligence, Second Edition
(WASI-II; [28]), as well as semi-structured interviews with the youth and their parent sepa-
rately. Interview data is reported in separate manuscripts [29,30]. The SRS-2 and WASI-II
were collected for sample description purposes.
Approximately every two weeks throughout the academic year—a total of 16 times—
parents received questions via an emailed survey link through REDCap. We selected a
biweekly schedule to promote recall and accuracy of responses. The surveys were very brief
but elicited information about the types of transition preparation activities parents and youth
had engaged in over the past 2 weeks (from a set list with space to add additional activities),
the total number of hours spent on those activities, and parents’ reported rating of transition
preparation (i.e., Rate how prepared you currently feel about (child)’s transition out of high
school? reported on a 100-point sliding scale where 1 = Not at all prepared and 100 = Most pre-
pared I could feel).
Because we expected many of the activities marked biweekly to be repeated over time, and
to reduce burden on response time, we asked our additional questions about activities (e.g.,
satisfaction) less frequently. Specifically, at three times during the academic year (i.e., Novem-
ber, February, and May), the research team followed-up with a data collection telephone call to
solicit additional information about the identified transition preparation activities, including
details about and their satisfaction with each activity (rated on a scale three point scale: 0 = not
satisfied, 1 = somewhat satisfied, 2 = very satisfied).

Data analysis
We addressed the first research question by examining descriptive statistics. For the second
research question, we used a multilevel modeling approach to estimate mixed model growth
curve parameters for parent preparedness over the course of the school year. Specifically, we
estimated linear mixed models, with random intercept and time slopes specified [31], using
Stata 15.1. For this analysis, we removed activities that were very rare (� 5 participants; see
Table 2). To account for multiple comparisons we used a Bonferroni correction; the multiple
testing adjusted significance threshold was p = 0.007 [32].

Results
Table 2 presents summary data about the number of participants who reported each transition
preparation activity type, how many total hours were spent on each activity by the sample, and
the average satisfaction rating was for each activity. Having discussions about the future was
the most commonly reported transition-related activity, both in terms of the number of partic-
ipants (N = 15) and the total hours (367). However, satisfaction with those discussions was
only moderate. The activities with the highest reported satisfaction were attending events with
transition-related information, adolescent participation in social activities, receiving commu-
nity-based services, and receiving transition-related information from a service provider.
Table 3 contains results of the mixed models. With regards to significant time by activity
predictors of preparedness, there were three significant results. At the beginning of the school
year, those who reported receiving school-based services had higher perceived preparedness
than those who did not, but demonstrated very little change in preparedness; this is in contrast

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Table 2. Preparation activities.

Transition-Related Activities N (%) Total Hours Satisfaction�
M (SD)
Discussions about the future 15 (100%) 366.83 1.29 (0.63)
Adolescent received school-based services 12 (80%) 124.50 1.22 (0.71)
Adolescent received community-based services 5 (33%) 33.00 1.67 (0.47)
Received transition-related information from a service provider 7 (47%) 23.25 1.67 (0.47)
Read or listened to transition information 10 (67%) 80.00 1.13 (0.33)
Attended event with transition information 9 (60%) 49.00 1.81 (0.39)
Adolescent engaged in volunteer or paid work 8 (53%) 282.50 1.63 (0.58)
Adolescent participated in social activities 8 (53%) 199.17 1.67 (0.47)
�
, Satisfaction was rated on a 3-point scale (i.e., 0 = not satisfied, 1 = somewhat satisfied, 2 = very satisfied).

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to those who did not receive school-based services, who showed increased preparedness across
the year. Similarly, those who did not participate in volunteer or paid work experiences
showed more growth in preparedness across the year than those who did. However, participa-
tion in social activities was associated with a significant increase in preparedness across the
year compared with those who did not report participating in social activities. The types of
social activities reported by parents included things like school band and scouting.

Discussion
This repeated time points study allowed in-depth exploration into transition preparation activ-
ities for youth with ASD during an academic year. In this study, parents reported frequent dis-
cussions about the future; these were the most commonly endorsed transition activity and
ranked second for total time spent. Frequent discussions about the future at home have been
shown in prior studies to be a predictor of involvement and participation in transition plan-
ning meetings at school which are associated with postsecondary outcomes such as college
enrollment [33,34]. Notably, however, the parents in this study reported only moderate satis-
faction with these discussions, and these discussions were not predictive of change in parent-
reported preparedness in the mixed model. Future work may need to consider ways to best
support families to have productive and impactful discussions about the future that facilitate
successful transitions to adulthood for youth with ASD.
Social activities were endorsed by about half the participants, but accounted for the highest
average time per participant and parents reported relatively high satisfaction. Furthermore, we
found using mixed models that social activities were predictive of increased preparation across
the year. The endorsed activities were not social skills classes, but real-world social experiences.
Though social activities are usually not selected solely for their ability to help youth prepare for
adulthood, parents in this study reported that these activities were important preparation for
their children. During data collection phone calls, parents explained that these activities helped
youth learn about responsibility and working with others, skills that will be useful in future
employment. Prior research with stakeholders has identified that real life experiences that fos-
ter skill development are positive for transition planning [35].
Our other mixed model findings are less easy to interpret. We found that for both school-
based services and work experiences, parents reported greater preparation at the start of the
school year but did not show increases associated with those experiences across the year. It
may be that those who knew they would be receiving school-based services felt optimistic that
the school would be helping to prepare their youth, however, as the year went on, they did not

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PLOS ONE AUTISM TRANSITION SHORT REPORT

Table 3. Multilevel (mixed) model growth curve estimates for parent preparedness trajectories.
Variable Transition-related Transition-related Transition Read or listened to Attended Youth engaged Youth engaged in
discussions with school-based information from transition transition- in paid or social activities to
youth services service provider information related events unpaid work build skills
Fixed effects
Time 0.75 1.32��� 1.10��� 0.88�� 1.09��� 1.27��� 0.66�
Predictor -4.57 12.05� 2.78 -7.99 5.84 5.93 -16.77���
Time� Predictor 0.37 -1.57�� -0.60 0.62 -0.64 -1.11� 2.38���
��� ��� ��� ��� ��� ���
Intercept 44.48 39.98 41.22 42.97 41.05 40.51 44.30���
Random effects
Time -0.31 -0.16 -0.16 -0.42 -0.25 -0.21 -0.64
Intercept 2.80��� 2.73��� 2.78��� 2.79��� 2.77��� 2.78��� 2.77���
Residual 2.24��� 2.20��� 2.23��� 2.24��� 2.24��� 2.21��� 2.20���
Statistics
Ll -722.78 -716.63 -722.17 -721.62 -722.6 -718.08 -712.98
Aic 1459.56 1447.27 1458.34 1457.24 1459.21 1450.15 1439.96
Bic 1482.22 1469.92 1481 1479.9 1481.86 1472.81 1462.61
N 188 188 188 188 188 188 188
�
, p < 0.007
��
, p < 0.0014
���
, p < 0.00014.

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see the progress they anticipated and thus their level preparedness remained static. Prior
research has demonstrated parent frustrations with transition planning and school supports in
high school, where there are commonly misalignments between what is needed and what is
received (e.g., [26,36]).
Regarding volunteer and paid work, we also saw that parents reported higher levels of pre-
paredness at the beginning of the year, but no increases over time. Although most people
believe that volunteer and paid work experiences can be valuable for transition preparation,
parents may have observed youth having difficulties in those experiences leading them to feel
less prepared across the year. It is important to note, however, that prior research has found
that employment while in high school is the strongest predictor of post-school employment
for youth with severe disabilities [12]. Thus, perhaps parents’ perceptions did not change, but
these experiences may still be providing value for transition preparation. Alternately, this result
may indicate that youth were not receiving adequate supports during these employment or
volunteer experiences. More work is needed in this area to better understand how different
transition preparation activities affect long-term outcomes for youth with ASD.
There are a number of limitations to consider for this preliminary study. First, the study is
limited by a small sample size that lacked diversity. However, we collected in-depth informa-
tion across an academic year, providing novel and robust information, and had sufficient
power to detect effects using multi-level modeling. Second, there may have been a “testing
effect” experienced by participants because of the frequent data collection, such that the experi-
ence of being repeatedly contacted by a researcher changed their experiences. Third, the rela-
tively wide age ranges of youth may be viewed as a limitation; however, it may have also served
as a strength to include a wide range in an exploratory study. Studies with larger samples are
needed to examine age-related differences. Finally, it is important to consider that parent per-
ceptions, as studied here, are distinct from more objective measures of preparedness. However,
given the pivotal role parents play during the transition preparation process and the influence

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PLOS ONE AUTISM TRANSITION SHORT REPORT

of their expectations on activity selection [24] and outcomes [25], their perceptions warrant
consideration.

Conclusions
Our preliminary study of parent-endorsed preparation activities throughout an academic high
school year provides an understanding of the various transition preparation activities youth
with ASD participate in during their adolescence. Commonly endorsed activities included dis-
cussions with youth and receiving school-based services. Whereas, adolescent social activities
were more connected with parent satisfaction and linked to an increased sense of preparation.
This research can be used to inform future work to understand the transition preparation
needs of families of youth with ASD and inform family-focused interventions to support suc-
cessful transition to adulthood. More research is needed to generate direct applications for
clinical practice, however, based on the findings of this study, clinicians may want to especially
promote productive family discussions about the future and youth engagement in social
activities.

Supporting information
S1 Appendix.
(DOCX)

Acknowledgments
Thank you to Carly Taylor and other research assistants at the University of Utah who helped
with this study. We also acknowledge the Consortium for Families and Health Research (C-
FAHR) at the University of Utah for providing the forum in which this project was developed.
Thank you especially to the families who shared their experiences with us throughout the
course of a year.

Author Contributions
Conceptualization: Anne V. Kirby, Marissa L. Diener, Cheryl Wright.
Data curation: Anne V. Kirby.
Formal analysis: Anne V. Kirby, Daniel E. Adkins.
Writing – original draft: Anne V. Kirby.
Writing – review & editing: Marissa L. Diener, Daniel E. Adkins, Cheryl Wright.

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