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Curr Psychiatry Rep. Author manuscript; available in PMC 2013 Dec 1. PMCID: PMC3492520
Published in final edited form as: NIHMSID: NIHMS410735
Curr Psychiatry Rep. 2012 Dec; 14(6): 732–738. PMID: 23015048
doi: 10.1007/s11920-012-0328-1
Adults with Autism: Outcomes, Family Effects, and the Multi-Family Group
Psychoeducation Model
Leann E. Smith, PhD, Jan S. Greenberg, PhD, and Marsha R. Mailick, PhD
Abstract
Although an increasing number of individuals with autism spectrum disorders are entering
adulthood, currently there are few evidence-based programs for individuals later in the life
course. In this paper we present an overview of recent research on outcomes for adolescents
and adults with ASD and highlight the role of the family for individuals with ASD during the
transition to adulthood. We also discuss multi-family group psychoeducation as a promising
model for use with individuals with ASD transitioning to adulthood.
Keywords: Autism, Autism spectrum disorders, ASD, Adolescence, Adulthood, Transition,
Psychoeducation, Family, Intervention, Outcomes, Psychiatry
Introduction
Autism spectrum disorders (ASDs) are developmental disabilities that affect an estimated 1 in
88 children in the US [1]). ASDs are lifelong conditions characterized by difficulties in commu‐
nication and social interaction, and repetitive behaviors and restricted interests. While there
has been high interest and investment on the part of researchers in understanding and treat‐
ing ASD during early childhood, there remains a dearth of research on ASD during adolescence
and adulthood [2, 3]. This lack of knowledge is particularly evident in the area of intervention;
very few programs are available to families as children move into adolescence and adulthood.
The 2010 U.S. Department of Health and Human Services’ [4] Interagency Autism Coordinating
Committee strategic plan for autism research indicated the important need for strategies to in‐
crease quality of life and improve functioning of individuals with ASD later in the life course. In
this paper we present an overview of recent research on outcomes for adolescents and adults
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with ASD, highlight the role of the family for individuals with ASD during the transition to adult‐
hood, and discuss multi-family group psychoeducation as a promising model for use of transi‐
tion-aged individuals with ASD.
Outcomes for Adolescents and Adults with ASD
For individuals with ASD, the normative challenges associated with the transition to adulthood
[5] are compounded with multiple difficulties unique to ASD. The emergence of adulthood of‐
ten involves transitions in educational, occupational, residential, and relational arenas and the
development of new roles and identity formation [6]. These transitions are particularly stress‐
ful for adolescents with ASD and their families because difficulty coping with change is part of
the behavioral phenotype of ASD, and the heterogeneity of ASD may make it challenging for
families to develop clear expectations for the future. Families of individuals with ASD also face
special challenges related to changes in the service system following high school exit, which ex‐
acerbates the normal stresses associated with supporting a child’s transition to adulthood.
Past research has demonstrated that anxiety is high for mothers of children with ASD during
their child’s adolescence as they anticipate their child’s transition out of school and worry
about the future [7]. Unfortunately, in many cases, the high level of parental concern is merited.
There is a significant loss of services for individuals with ASD upon exiting the school system
and the picture of adult services can be bleak, with long waiting lists and few opportunities for
maximum independence [8–10]. In many cases, individuals with ASD will lose insurance cover‐
age and access to therapies during the transition to adulthood [11]. Even individuals with ASD
who initiate services in adulthood are more likely to have difficulty maintaining those services
than adults in other disability groups [12]. For example, using a well-characterized, longitudi‐
nal sample of young adults with ASD who recently exited the school system, Taylor and Seltzer
[13] found very high rates of unemployment, with only 18% of the sample reporting competi‐
tive or supported employment. Notably, of the young adults in this sample who were competi‐
tively employed, the vast majority was engaging in low-paid, menial work and nearly all were
working less than 30 hours per week. Additionally, over 25% of the young adults with ASD
without intellectual disability (ID) had no daytime activities of any kind compared to only 8% of
young adults with ID, suggesting a disparity between those with and without ID in the availabil‐
ity and/or appropriateness of adult day services [13].
Similarly, a recent analysis of national survey data by Shattuck and colleagues [14] revealed
that after young adults with ASD left the public school system, 80% continued to live at home,
only 32% attended postsecondary education, just 6% had competitive jobs, and 21% had no
employment or education experiences at all. Further, 40% reported having no friends.
Consistent with the findings of Taylor and Seltzer [13], a number of postsecondary outcomes
were worse for individuals with ASD without ID. For example, they were three times more
likely to have no daytime activities (e.g. employment, post-secondary education, day services;
[14]). This lack of services and day time activities following high school exit may place young
adults with ASD at risk for increased behavioral and mental health difficulties [14, 15] and de‐
creased functional independence [16].
Taken together, these findings demonstrate the significant, continuing need for targeted inter‐
ventions during the adolescent and adult period for individuals with ASD. Programs that help
families of individuals with ASD find appropriate local services and daytime activities for their
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soon-to-be young adult may be particularly beneficial. In the absence of an adequate adult ser‐
vice system, increasing empowerment and advocacy skills of parents is a potential mechanism
by which to help families access and develop supports and community activities for their chil‐
dren as they move into adulthood [17]. Furthermore, given the current economic climate and
the dearth of appropriate formal services for young adults with ASD, it becomes all the more
imperative to offer interventions that increase a family’s capacity to find and create informal
supports and activities. Thus, interventions are needed that help parents and teens learn new
skills and promote empowerment during the transition to adulthood.
In the next section, we further delineate the central role of the family in the lives of adolescents
and adults with ASD, with particular attention given to past research on the bidirectional effects
between individuals with ASD and their families. Later we highlight multi-family group psychoe‐
ducation as one intervention method with promising applications for families of teens with
ASD.
Families of Individuals with ASD during Adolescence and Adulthood
Raising a child with an ASD is a profoundly stressful experience [18, 19]. Particularly stressful
for families is the high level of challenging behaviors presented by many children on the spec‐
trum [7, 20, 21]; these behavior problems can continue into adulthood and remain a barrier
for adult independence and community involvement [22]. Although there is some abatement of
autism symptoms and behavior problems over time [2, 23], as noted above, there is also evi‐
dence that improvements in behavioral functioning slow down once the young adult leaves
school [15], suggesting potential risk for maladjustment during young adulthood.
Parenting a child with ASD during adolescence and adulthood is associated with significant
stress. In an examination of the day-to-day experiences of mothers over an 8-day period, Smith
and colleagues found that mothers of adolescents and adults with ASD were three times more
likely to experience a stressful event on a given day than mothers of children without disabili‐
ties. Daily stressful experiences subsequently were associated with mothers’ emotional well-
being [24]. The high level of stress experienced by parents of adolescents and adults with ASD
also takes a toll on the physical well-being of parents. Recent work indicates that mothers of
adults with ASD have significantly more physical health symptoms including fatigue, joint pain,
gastrointestinal problems, and headaches than mothers of adults without disabilities [25].
Seltzer and colleagues [26] recently examined differences in cortisol expression between
mothers of adolescents and adults with ASD and mothers of similarly-aged children without
disabilities and found that mothers of individuals with ASD had significantly hypoactivated cor‐
tisol levels; this pattern of low cortisol is similar to what has been found in individuals with
caregiver burn-out and post traumatic stress disorder. These findings clearly highlight the sig‐
nificant risks to parental emotional and physical health associated with raising a child with ASD
and underscore the need for appropriate intervention services to help reduce stress for the
entire family system across the life span. Indeed, the profile of poor health and physiological
dysregulation manifested by mothers of individuals with ASD constitutes a public health chal‐
lenge of considerable magnitude, given the prevalence of ASD.
It is important to note that within any family system, transactions among family members are
bidirectional. As such, in addition to risks for parental health due to stressful caregiving, high
levels of family distress also can create difficulties for the individual with autism. In a review of
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studies of families of children with intellectual and developmental disabilities (IDD), Hastings
and Lloyd (2007) argued that the challenges associated with caring for an individual with IDD
may create a family context where some level of negative emotional intensity, referred to as ex‐
pressed emotion (EE), is to be expected. The presence of high EE in families may in turn exacer‐
bate or maintain behavior problems [27]. For instance, high levels of EE, namely criticism of
the son or daughter by the parent, have been associated with elevated levels of maladaptive be‐
haviors in individuals with intellectual disabilities [28]. Other studies in child populations have
likewise found parental criticism of the child to be a particularly salient aspect of the family
emotional environment in predicting child behavior problems [29].
Consistent with the general literature on EE, past longitudinal work among families of adoles‐
cents and adults with ASD has demonstrated that high levels of EE, particularly criticism, can
lead to increases in child behavior problems and autism symptoms over time [30, 31]. In con‐
trast, research shows that when parents of adolescents and adults with ASD continue to re‐
main warm and positive toward their children, the behaviors of their children improve [32]. As
such, intervention services that reduce family stress and support family-wide positivity can
promote well-being not only for parents, but also for adolescents and young adults with ASD.
Notably, from a family systems perspective, transition periods for family members and family
systems, such as adolescence, may be particularly effective times for interventions given that
the family system is more fluid and reorganizations in the system are taking place [33]. As such,
adolescence may be an ideal time for interventions that reduce the level of stress and EE, and
promote positivity, within the family. Below we discuss prior research on psychoeducation in‐
terventions in clinical populations and highlight our work to adapt this model of intervention
for use among families of adolescents with ASD.
Multi-Family Group Psychoeducation Interventions
Multi-family group psychoeducation is a well-developed intervention approach with proven ef‐
ficacy among families of individuals with psychiatric conditions such as schizophrenia [34, 35]
and mood disorders [36, 37]. Findings for this type of intervention for schizophrenia are par‐
ticularly well-documented, with more than 30 randomized clinical trials reporting benefits in‐
cluding lower rates of relapse and reduced symptoms for the individual with schizophrenia as
well as improved well-being for family members [35]. The positive effects of psychoeducation
groups also have been seen in samples of children and adolescents with psychiatric disorders.
For example, in a study of families of children with mood disorders, families in the multi-family
psychoeducation group reported increased knowledge of symptoms, increased positive family
interactions, and increased service utilization than the waitlist control group [38]. Similarly, in a
study of family psychoeducation with adolescents with major depression, adolescents in the ex‐
perimental group displayed more gains in social functioning and greater improvements in par‐
ent-child interactions relative to the control group [39].
Although the content and components of psychoeducation interventions vary by study and
type of mental health condition, they have several key common elements: The intervention in‐
volves weekly group sessions wherein multiple family members are together provided with educa‐
tion on the nature, course, and management of the condition as well as training in and activities
for practicing problem-solving. In sum, the multi-family psychoeducation model emphasizes ed‐
ucation and problem-solving strategies, with a focus on reducing family stress, lowering EE,
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and increasing empowerment. This model of intervention delivery holds promise for applica‐
tions in multiple populations, including families of individuals with disabilities. Below we out‐
line our work in developing and pilot testing a multi-family group psychoeducation model for
families of adolescents with ASD.
Given the significant positive effects of multi-family group psychoeducation interventions found
in studies of families of individuals with mental health conditions, we designed a psychoeduca‐
tion curriculum for families of adolescents with ASD based on evidence from longitudinal re‐
search and feedback from families of individuals with ASD. First, using past multi-family psy‐
choeducation interventions as a model, we drew from the research literature on autism during
adolescence and adulthood to create a detailed outline of a potential intervention curriculum.
Next, we held three focus groups composed of families of adolescents and young adults with
ASD as well as professionals working with these families and individuals. During each focus
group, we asked for feedback on curriculum content and intervention delivery. Notably, focus
group participants were universally enthusiastic about a program for families of adolescents.
Comments solidly converged with the empirical literature on families of children with ASD and
our proposed psychoeducation model. Specifically, participants noted needs including (1) in‐
creasing community activities and connections, (2) help with problem-solving, and (3) training
in advocacy, highlighting the relevance of our research-based intervention goals for the end-
users of the treatment. There also was strong interest in our proposed informational topics,
particularly transition planning, self and family care, and legal issues. Families reported that
they would be more likely to maintain participation if there are activities for the adolescent
with ASD (as it provides both respite for the parents and a social outlet for the teen) and real
solutions are being offered (in contrast with only opportunities to vent). Based on focus group
feedback, the research team refined the intervention curriculum and finalized the specific pro‐
gram components, resulting in the Transitioning Together program.
Consistent with a multi-family psychoeducation model, the Transitioning Together program has
two stages of intervention: two individual-family joining sessions and eight multi-family group
sessions. The joining sessions allow the family to meet with the intervention staff prior to the
group meetings in order to develop rapport and clarify family goals. For Joining Session 1, par‐
ents have an opportunity to discuss their family history and express their hopes and worries
for their child with ASD. For Joining Session 2, parents complete an “Ecomap” depicting the
type of connection (strong, weak, stressful, or hoped for) they have with various individuals,
services, and community organizations. At the close of Joining Session 2, parents work with the
facilitator to create a list of goals for the Transitioning Together program. Joining sessions are
an essential aspect of the treatment as they lay a foundation of trust and collaboration for ar‐
ticulating and achieving family goals, and increase family commitment and attendance, and re‐
duce attrition. After completing the joining sessions, parents attend 8 weekly group sessions.
Both parents are encouraged to attend. Group sessions involve education on a variety of topics
relevant to ASD and guided practice with problem-solving for individual family problems. The
topics and goals for each session are presented in Table 1. Sessions based on published findings
of our research group are marked with an asterisk.
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Table 1
Summary of Intervention Session Topics
Session Topic Goals
Group Autism in Adulthood Meet other families
Meeting 1 *Learn about developmental course of ASD
Group Transition Planning *Learn about education, occupational, residential, service
Meeting 2 system, and health transition
Group Problem Solving Learn and practice problem-solving method
Meeting 3
Group Family Topics *Learn about how family environment impacts behaviors
Meeting 4
Group Addressing Risks to Adult *Learn strategies for behavior management during late
Meeting 5 Independence adolescence and early adulthood
*Discuss advocacy strategies when behaviors are
misunderstood by community
Group Community Involvement *Finding community activities and social opportunities
Meeting 6 Discuss safety concerns for adults with ASD
Group Risks to Health *Learn about risks to parental health and well-being
Meeting 7
Group Legal Issues Receive information on long-term planning: guardianship,
Meeting 8 wills, trusts, etc
Sessions last approximately 1.5 hours each. Sessions begin with 15 minutes of socializing, fol‐
lowed by 30 minutes of presentation on a topic and 45 minutes of discussion and problem-
solving. For each problem-solving activity, one family’s problem is chosen by the group. Next,
the group works together to select strategies that the family can implement to address that
problem. The family is able to share updates on strategy implementation the following week.
This process provides an opportunity to gain from the vast experiences of the multiple families
present and to focus on addressing problems in a constructive, non-critical way.
At the same time and location (but in a different room) as the parent group sessions, the ado‐
lescents with ASD participate in a social group. Based on feedback from community partners
during our development work, we know that it is important to tailor the activities of the social
group to meet the needs of the specific youth in the group. As such, the social group involves a
variety of games and learning activities such as skits, role plays, cooking, crafts, and music.
Pilot Results
In order to pilot test the intervention, we recruited 11 families of adolescents with ASD (aged
15–18 years; M = 16.2, SD = 1.1) to participate in the 8-week Transitioning Together program,
resulting in two groups of families who completed the intervention program. For each week of
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the intervention, parents attended group sessions which lasted approximately 1.5 hours. While
parents attended the parent group sessions, the adolescents with ASD participated in a social
group with other adolescents. Variables related to feasibility and acceptability were measured
at the conclusion of each group session as well as during exit interviews. Additionally, before
and after the intervention, data were collected from parents regarding (1) parental knowledge
and empowerment, (2) parent-child relationship quality, (3) child behavior, and (4) parent
stress. To measure parental knowledge, parents rated their agreement with statements such as
“I have a good understanding of my child’s disability” on a 5 point scale ranging from not at all
true to very true. Parent-child relationship quality was assessed using the Positive Affect Index
[40]. Five self-report items were drawn from this scale that reflected the parent’s feelings to‐
ward his or her son or daughter (e.g. “How much affection do you have toward your
son/daughter?”). Additionally, the Five Minute Speech Sample was used to code EE based on the
coding manual developed by Magañ a et al. [41]. For this study we were interested in criticism,
warmth, and positive remarks. Four items were used to measure the behavior of the adoles‐
cent with ASD. Parents rated the severity of autism symptoms on a 10 point scale (10 being the
most severe). On a five point scale (never to all the time) parents also rated how often they
were walking on egg shells around their child, how often their child had a behavior problem
come out of nowhere, and how often they felt happy or proud of their child.
Notably, all families remained in the Transitioning Together program for the course of the study.
One family, however, did not participate in exit interviews due to a family tragedy. Outcome data
were subsequently available from 10 families (10 mothers and 8 fathers). Satisfaction data in‐
dicated that parents were highly satisfied with the weekly sessions and felt that sessions were
useful. To explore possible change from pre- to post-intervention, we conducted 1-tailed paired
samples t-tests on variables in the following domains: parent knowledge, parent-child relation‐
ship quality, child behavior, and parent stress. Given statistically nonsignificant intraclass corre‐
lations on most variables of interest, mother and father data were considered as independent
observations. As shown in Table 2, there were significant positive changes from pre- to post-in‐
tervention in parents’ understanding of their child’s disability and of the service system. There
were also significant improvements in the parent-child relationship domain. Most notably, par‐
ents were rated (by an independent blind rater) as having higher levels of warmth toward their
son or daughter. Further, although we did not find significant changes in autism symptoms or
in parental report of stress, following the intervention parents were more likely to report being
happy or proud of their child. Parents also increased in their ability to predict when their child
would have a behavior problem from pre- to post-intervention.
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Table 2
Paired Samples T-Tests Comparing Pre-Intervention to Post-Intervention Scores
Pre- Post- t (df; 1-tailed Effect
Intervention Intervention sig) size
(Cohen’s
D)
PARENT KNOWLEDGE
I have a good understanding of my child’s 3.17 (.86) 3.50 (.71) t(17)= 2.06; .49
disability p=.03
I understand how the service system is 1.78 (1.11) 2.22 (1.00) t(17)= 1.72; .40
organized p=.05
I tell people in agencies how services for 2.00 (1.37) 2.06 (.94) t(17) =.25; .06
children can be approved p=.40
PARENT-CHILD RELATIONSHIP
Relationship Quality 22.89 (2.95) 24.00 (3.27) t(17) = 1.64; .39
p=.06
Warmth 2.61 (.92) 3.00 (1.14) t(17) = 1.94; .46
p=.03
Positive Remarks 2.33 (2.06) 2.17 (1.79) t(17) =.36; .09
p=.36
Criticism .94 (.80) .89 (.76) t(17) =.27 .06
p=.40
CHILD BEHAVIOR
Autism severity rating 5.06 (1.73) 5.33 (2.09) t(17) =.61 .14
p=.28
Walking on egg shells around s/d 1.39 (.92) 1.44 (.98) t(17) =.33 .08
p=.37
Behavior problems seem to come out of 1.89 (.96) 1.50 (.71) t(17) = 2.12; .50
nowhere p=.02
My s/d makes me happy/proud 2.00 (.77) 2.39 (.61) t(17)= 2.36; .50
p=.02
PARENT STRESS
Parent stress rating 6.22 (2.69) 6.50 (1.98) t(17)=.70; .17
p=.25
Conclusions
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In this paper we discussed current research on outcomes for individuals with ASD during
adulthood as well as highlighted the important role families play in the transition to adulthood
for their son or daughter. There is mounting evidence that few adults with ASD achieve tradi‐
tional markers of adult independence and many individuals have limited to no regular day time
activities following high school exit [8, 13, 14]. Not surprisingly, the transition to adulthood is a
time of high stress for families of children with ASD; this stress, in turn, has been associated
with compromised health and well-being in parents who continue to be the primary caregivers
for their children well into adulthood [26]. Further, negative emotional intensity (and a lack of
positivity) in the family home has been associated with increases in symptoms and problem be‐
haviors in individuals with ASD over time [30–32]. All these findings converge to indicate the
transition to adulthood is a time of elevated risk for families of individuals with ASD, creating a
need for target interventions during this period. Currently there is a paucity of such
programming.
We also argued in this paper that multi-family group psychoeducation is a potentially powerful
intervention model for reducing family distress during the transition to adulthood. Our pilot
study of the Transitioning Together program demonstrated the feasibility and acceptability of
an 8-week group-based psychoeducation curriculum. Participating parents displayed positive
changes in knowledge as well as their attitudes about their son or daughter. Particularly
promising was evidence of parental positive reframing about the child’s behavior and an in‐
crease in parental warmth. Past research has documented that parental positivity (and lower
criticism) is associated with improvements in child behavior problems and autism symptoms in
samples of adolescents and adults with ASD [30–32]. These findings also highlight that, while
certain aspects of the family system are amenable to change over an 8-week period, other,
more negative dimensions such as behavior problems are more deeply entrenched and war‐
rant direct psychological or psychiatric intervention.
Given the rapid increase of autism diagnoses since the 1990s [42], more children than ever be‐
fore are entering adulthood with an ASD diagnosis. Despite a pressing need for research and
interventions during this transition period, there currently are very few empirically-validated
programs for adolescents with ASD. In the absence of appropriate transition services, the bur‐
den of care falls on the family. Multi-family group psychoeducation is one promising approach
to address these needs and potentially ameliorate risks for individuals with ASD and their fami‐
lies during the transition to adulthood.
Acknowledgment
This project was supported by grant 1UL1RR025011 from the Clinical & Translational Science
Award (CTSA) program of the National Center for Research Resources, National Institutes of
Health. This research also was supported by Autism Speaks (7523) and by NIH grants R01
AG08768 and P30 HD03352. We are extremely grateful to the families who participated in this
study; without their generous commitment, our research would not be possible.
Footnotes
Disclosure No potential conflicts of interest relevant to this article were reported.
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