Brief transition-focused education for families of autistic youth: preliminary mixed-methods investigation

Abstract

Purpose

The transition to adulthood is one of the most challenging and complex processes for autistic youth and their families. Few evidence-based transition support programs exist, and those that have garnered support require long-term commitments and resources that may prohibit participation by families with financial and time limitations. The current study investigated the feasibility and initial promise of a brief, caregiver-focused educational transition program for families of autistic youth delivered in the community over a single day.

Methods

Quantitative informant-report and qualitative interview data were collected from 12 caregivers of autistic youth before and after program participation. Using a partially mixed sequential equal status design, quantitative and qualitative data were integrated to evaluate change in caregiver transition knowledge and empowerment, as well as caregivers’ perceptions of program feasibility, acceptability, and usefulness.

Results

Caregivers reported significant increases in knowledge of transition-related topics and sense of empowerment regarding their family life. Caregiver perceptions of the intervention suggest they found it feasible, acceptable, and useful.

Conclusions

Short-term transition programming may be a helpful option for caregivers who seek transition supports for autistic youth.

IMPLICATIONS FOR REHABILITATION

• The transition to adulthood is a stressful and complex process for autistic adolescents and their caregivers.

• Many caregivers lack time, financial resources, and access to comprehensive transition supports.

• Brief educational support is a potential alternative for aiding caregivers in planning for and assisting with adolescents’ postsecondary training/education, employment, social, and living arrangements.

• The Planning for your Loved Ones Future (PLOF) intervention showed promise in improving caregiver knowledge about transition and sense of empowerment, and was described as feasible, accessible, and helpful by those who participated in a pilot study.

Keywords:

• Autism
• transition
• family
• caregiver
• adulthood

Autism spectrum disorder (ASD) is a neurodevelopmental condition characterized by persistent difficulties in social communication and interaction, and restrictive and repetitive behaviors and interests [1]. Currently, an estimated 1 in 36 children [2] and 1 in 45 adults [3] have received this diagnosis in the US. Given that approximately 100,000 autistic students transition out of high school each year [4] and increasing numbers of these students are enrolled in general education (i.e., typical classrooms including students with and without disabilities; [5], effective preparation for the transition to adulthood is essential.

Despite the substantial number of autistic youth preparing to enter adulthood, there are few supports in place to ensure a successful transition and outcomes are often suboptimal [6]. After they leave high school, autistic youth have substantially fewer services available to them and 1 in 4 do not receive services of any kind nor are they engaged with school or work [7]. Untreated issues, particularly concerning mental health, commonly occur during this period and relate to poorer psychosocial functioning later in life [8]. Furthermore, compared with those with other types of disabilities, autistic youth experience the lowest rates of employment, postsecondary education, independent living, and friendships [7]. Findings from such studies have been confirmed in meta-analytic results. Magiati et al. [9] reviewed 25 studies and concluded that at least 50% of participants were dependent on their parents to some degree into adulthood (average age at follow-up assessment was 24.3 years), and required notable support for their living situation, employment, and educational activities. Similarly, approximately 80% of autistic adult participants from all 18 studies reviewed in a meta-analysis by Mason et al. [10] reported they had not attained competitive employment, romantic relationships or friendships, or living independently. Unfortunately, caregivers often lack awareness of the importance of transition plans that should be included in youths’ Individualized Education Programs (IEPs) to prepare them for successful entrance into adulthood. With such plans, youth can be equipped with vital skills that foster success in employment and postsecondary education settings [11,12]. Given the high level of involvement of families in the adult lives of autistic individuals, family members need assistance in developing individualized and attainable goals for their autistic loved ones [13].

Caregivers of transition-age youth face many barriers to supporting the passage from high school to postsecondary life, including increased rates of stress, mental health issues, and lack of empowerment [14,15,16]. These caregivers face considerable burdens such as the need for ensuring youth safety and engagement in productive activities, that generally increase with the presence of youth co-occurring mental health issues and caregiver perceptions unmet service needs [14] and unsurprisingly, caregivers at this stage report burdens resulting from greater needs for thinking about, acquiring information, and planning for their child’s transition out of high school [17]. Bi-directional negative associations between mental health problem severity and caregivers’ sense of empowerment [18] underscore the need to equip caregivers with information and skills needed to navigate the complexities surrounding successful transition for autistic youth. Moreover, higher levels of caregiver burden are related to lower parenting self-efficacy for caregivers of autistic youth [19]. Results synthesized across several studies suggest caregivers of autistic youth regard advocacy for their children as an ongoing challenge, but also a source of hope and a mechanism for coping with fears surrounding their child’s current and future supports [20]. Likewise, caregivers of autistic youth report greater levels of parenting self-efficacy when they are involved in interventions and satisfied with the training they received [19], and lower caregiver burden is reported by caregivers with an active rather than passive approach to managing the demands of supporting autistic youth’s transition [17]. Thus, the provision of information to caregivers that equips them with the skills and knowledge to support youths’ successful entrance into adulthood stands to benefit both youth and their caregivers.

Transition-focused intervention programs hold promise in assisting caregivers in advocating for youths’ transition-related needs and engaging more actively in the transition planning process throughout youths’ secondary school years [11,15,21]. Results of an evaluation of a 12-week transition-focused psychoeducation program for caregivers of autistic youth conducted by [15] indicated significant increases in knowledge and sense of empowerment about the adult service system with moderate to large effects. Additional findings suggest other benefits to caregivers, such as improved caregiver problem-solving skills [21] and caregiver knowledge of available adult services for youth and empowerment [11,15]. However, these programs are often delivered in the context of highly controlled, well-funded research programs that limit the potential for scalability in community-based settings. For instance, programs typically require participation in 6–12 group and/or individual education and planning sessions across several weeks to months. Logistical and resource barriers (e.g., time, money) attenuate the viability of such programs when implemented by practitioners, such as community mental health providers and school professionals [22].

Caregivers of autistic children report higher levels of stress, family conflict, and limited time availability [23] all of which likely impede their ability to participate in long-term transition-focused programming. Of similar concern are the limitations to feasibility of interventions designed to improve transition-related skills (e.g., adaptive behavior, social skills) in high school identified by educators [24], and, accordingly, caregivers’ sense that support for these skills is increasingly more their responsibility as their children age. Caregivers remain a significant contributor to the development of youth transition-related skills, such as talking with youth early in their education about their interests and potential career paths, supporting the development of work-related skills, and eventually assisting youth with tasks such as completing employment applications [25]. When asked about their role in transition planning and preparation, caregivers describe their contribution as central to these processes and accordingly express a desire for transition-related information early in their children’s educational experience [12]. Likewise, interviews with caregivers of high school and middle school autistic youth illustrate caregivers’ centrality in coordinating efforts between schools and community agencies as youth prepare to leave high school and enter adulthood. Unfortunately, this sense of caregivers’ centrality is accompanied by the notion that coordinated efforts to inform caregivers about transition-related supports, services and processes are lacking within the school and community organizations where caregivers are accustomed to seeking such knowledge [26].

Publicly funded schools and community agencies are increasingly facing resource scarcity while simultaneously being met with the challenge of better serving the complex needs of students with disabilities as they transition to adulthood. Unfortunately, much of the evidence for transition parent education programs focuses on those that are very resource intensive [27]. Existing programs focus on self-determination, planning, and advocacy within the domains of work, living arrangements, continuing education, and community involvement [28,29]. The myWAY Employability web platform is an accessible program that allows both the autistic person and a caregiver to work together in designing an individualized, strengths-based plan for obtaining employment [30]. Research on the in-person workshop that served as a precursor to development of myWAY suggests caregivers and autistic youth gained knowledge and confidence about preparing for the post-high school transition [31]. There is a need for similar cost-effective transition interventions that cover broad topics and can be feasibly implemented in school and community settings without extensive time, budgetary or human resource requirements that may preclude scalability [32]. Given the lack of efficient programming to prepare caregivers to support the transition of autistic youth into young adulthood, and myriad barriers to engagement in complex, multi-component interventions also faced by these caregivers, there is a need for brief, targeted supports to equip caregivers with the knowledge regarding the broad landscape for autistic youth following high school.

The Planning for Your Loved Ones Future (PLOF) intervention was developed to address this need. The PLOF intervention was designed to provide caregivers with the resources and knowledge related to postsecondary transition services and support in the context of a single, half-day program. PLOF addresses critical gaps in transition-related services for autistic individuals identified by youth with autism, their families, and service providers including the need for increased attention on the changing social and physical settings alongside skill development as youth move into adulthood, and caregiver assistance with understanding and navigating their evolving role in supporting youth success [33]. Unlike other programs (e.g., [11,15]), PLOF requires a single-day time commitment from caregivers and providers, offering a more feasible option for busy families and facilitators [22]. The intervention addresses the topics of transition planning, independent living, transportation, employment, recreation, financial and legal planning, and higher education preparation. A licensed psychologist and allied mental health professional developed PLOF by integrating information from scholarly literature (e.g., [34–36]), local resources (e.g., state Department of Education, Department of Health and Human Services, housing development organization, advocacy organizations; local school district young adult programs, university student support programs) and clinical knowledge of salient topics related to successful transition for autistic youth. The current study addressed the following research questions: (1) Does caregiver knowledge about transition topics and practices increase following participation in the PLOF program?, (2) Do caregivers who participate in the PLOF program report significant gains in their sense of empowerment following participation?, and (3) What do caregivers report about the feasibility, acceptability and usefulness of the PLOF program?

Materials and methods

Participants and setting

Approval from the University’s Institutional Review Board was obtained prior to conducting the study. The PLOF program was delivered to caregivers in local community centers in a small Midwestern town. The present study included data collected from 12 caregivers participating in PLOF programs held in spring 2018 (Cohort 1, n = 8) and 2019 (Cohort 2, n = 4). The sample size is reflective of the community-based nature of the project and includes all participants of the workshop who reported their child was diagnosed with autism spectrum disorder and consented to participation in the research. One caregiver reported their child was only diagnosed with ADHD; data from this caregiver was excluded given the workshop was designed for caregivers of autistic youth. Caregivers were recruited through local caregiver support groups, who shared a flyer inviting them to attend the program Participation in the study was open to any caregiver attending either session who provided informed consent for research participation. Across both cohorts, caregiver age ranged from 40 to 63 years, and ethnicity was reported as white (75%), Black/African American (8%), and Asian American (17%). The majority of caregivers (67%) were married, 25% were divorced/divorcing, and 8% were widowed. Several caregivers (50%) reported earning a graduate degree, while others completed some graduate school (25%) or an undergraduate degree (25%). Gross yearly family income was reported as: $40,001–50,000 (17%), $50,001–75,000 (17%), $75,001–100,000 (17%), $100,001–200,000 (42%), and $200,001 or more (8%).

Youth of caregivers attending the program were mostly male (92%) and ranged in age from 12 to 28 years. All youth were identified by their caregivers as having been diagnosed with autism or an autism spectrum disorder by a clinical psychologist, school psychologist, and/or medical doctor. All but one youth had comorbid conditions, including ADHD, apraxia, speech and learning delays, hearing loss, and genetic conditions. Youth were enrolled in grade 6 through college/young adult programs. Of the youth attending middle or high school (n = 10), the mean percentage of time spent in regular education was 72% and most (80%) were on track to earn a high school diploma, meaning they fulfilled the general education requirements for high school graduation. The remaining 20% (n = 1) were anticipated to earn a certificate of high school completion, meaning their educational plan was substantially adapted from general education graduation requirements. One additional youth had not yet established a “track.”

Measures

Transition knowledge

Caregivers were asked to indicate the degree to which they felt knowledgeable about topics related to their child’s eventual progression from high school to post-secondary education and life. The measure was developed by the researchers and included 11 items aligned to topic areas included in PLOF (e.g. How much do you know about independent living/housing options?), each rated on a 5-point scale ranging from 0 “none” to 4 “a great deal.”

Family empowerment scale (FES)

The FES [37] is a 34-item scale measuring empowerment in caregivers of children with disabilities across 3 subscales: Family (caregivers’ organization of everyday activities in the home; α = .88), Service System (caregivers’ interaction with relevant service providers to obtain services for their children; α = .87) and Community/Political (caregivers’ advocacy with policymakers, agencies, etc., for the population of which their child is a member; α = .88). Caregivers rate each item (e.g., “I am able to get information to help me better understand my child”) on a 5-point scale ranging from 1 “not true at all” to 5 “very true.” Consistent with previous research, mean scores were calculated for each scale by totaling items scores for each scale and dividing by the total number of items for the given scale. Evidence for convergent validity of FES scores with measures of parenting self-efficacy, activation, stress, and child behavior and psychological difficulties has been demonstrated across several studies [38]. Though developed for caregivers of children with emotional disorders, the FES has been used in research on caregivers of autistic children. Weiss et al. [18] report good internal consistency (α = .90) for the family subscale in a sample of 228 caregivers of autistic youth ages 6–21 years, and the FES was sensitive to change resulting from a parent-focused treatment for young autistic children [39].

Caregiver interviews

Caregivers participated in individual interviews following the program and at the 3-month follow-up assessment. Interviews were conducted in person or over the phone, depending on the caregiver’s preference. Interview questions addressed: (1) caregivers’ perceived knowledge gains from participation in PLOF, (2) suggested improvements to the PLOF program content and delivery, (3) how PLOF compared to other transition-focused interventions/services, and (4) potential feasibility/adaptations for translating the program to a web-based platform.

Procedures

The PLOF program was delivered in a single day training to clinicians and school-based professionals. After delivering the program to professionals, the development team perceived the full-day training as potentially overwhelming to caregivers so advertised the program in multiple, 90-min sessions. However, this format created logistical barriers for caregivers because it required attendance after work hours on a weekday evening. The decision was then made to partner with the local school district caregiver advisory group to offer the training again in a single day for caregivers.

As noted above, PLOF was developed by two local clinicians (one of whom is the third author) who were serving the autistic community through a local psychology practice and recognized a gap in available information for caregivers about high school and postsecondary transition. For several years prior to PLOF development, the clinicians coordinated care for these families with local school transition specialists and community-based service providers (e.g., rehabilitation counselors), thus were well-versed in available supports and service attainment procedures. This clinical knowledge was integrated with recommendations from the research literature (e.g., [34–36]), to create PLOF content. Module topics and descriptions are displayed in Table 1. Though autistic youth and young adults were not co-creators of the intervention, one clinician (third author) implemented intervention content with these individuals and their caregivers in individual sessions and gathered informal feedback that shaped PLOF as it was prepared as a group-based intervention for this study. Nevertheless, the voice of autistic adolescents and young adults should be included in future refinement and testing of this intervention.

Table 1. Planning for your loved one’s future module content.

Module	Title	Description
1	Building a Bright Future: Transition Planning During High School	Overview of transition planning process, including information on the Individualized Education Program (IEP), Education Development Plan (EDP), and developing a Personal Curriculum. Also includes benefits and disadvantages of pursuing a high school diploma or certificate of alternative completion.
2	Living Independently: Resources for Housing, Healthcare, and Independent Living	Resources and services essential for living independently; self-advocacy, independent living services, housing, healthcare.
3	Resources for Transportation, Employment and Recreation	Resources and information to ensure individual is supported and can have fun in the community. Services to support gainful employment or enriching volunteer work are also covered.
4	Securing My Loved One’s Future: Finances & Legal Safeguards	Knowledge and resources to ensure financial security for the individual and legal guardianship if necessary.
5	Off to College: Preparing for Higher Education	Challenges with higher education, and resources and tools to ensure success in coursework.

Caregivers were recruited through the listserv and Facebook page maintained by a local caregiver advocacy group. This group provided co-sponsorship in the form of space for the programs to be held. The program was open to anyone who attended. Caregivers were asked to RSVP but were also welcome to attend without pre-registration. Each program was scheduled for four hours and included breakfast and/or lunch for the caregiver attendees. The third author, who co-developed PLOF and is a licensed psychologist, facilitated both programs. Each program included a combination of didactic presentations with visual supports (i.e., PowerPoint presentation, videos of caregivers and professionals sharing their experiences/expertise regarding adult transition, caregiver handouts). The facilitator provided an overview of each topic using a PowerPoint presentation with embedded videos, referencing caregiver handouts with additional information throughout the presentation. After the overview, the facilitator allowed time for participant questions and discussions. Throughout each program, caregivers shared their personal experiences and exchanged information in addition to the information shared by the facilitator. Caregivers were asked to complete study measures by the researchers (first author and graduate research assistants) before and after the program. Caregivers were also asked to participate in individual phone interviews with a researcher (first author or graduate research assistant) shortly after the program and at a 3-month follow-up. The first author trained graduate research assistants in general interviewing techniques and the interview protocol developed for the study prior to the completion of study interviews.

Analyses

To address research questions 1 and 2, we utilized a partially mixed sequential equal status design common in program evaluation research [40] in which data were not analyzed until both facets were collected (partially mixed), collecting quantitative first, followed by qualitative data (sequentially). Both facets were given equal weight (equal status). The sequential nature of data collection was necessary as participants could not discuss their experiences until after the program was complete. Both strands were given equal access as they were equally able to answer the research questions with the qualitative data expanding the interpretation of the quantitative results [41]. Data for research question 3 were analyzed via thematic analysis process, described below. Thematic analysis was selected because it provides a set of flexible analytic procedures for moving from raw data to parsimonious themes guided by a research question [42]. Pseudonyms are used below when describing exemplary quotes to protect the confidentiality of participants.

Quantitative

Given the small sample size and preliminary nature of the study, data were combined across both cohorts. Demographic data were analyzed descriptively. The nonparametric Wilcoxon Signed Rank Test was conducted in SPSS Version 29 [43] to evaluate differences in caregiver empowerment and transition knowledge before and after participation in PLOF. The decision to use a nonparametric test was based on the small sample size and non-normal distribution of the data. This approach evaluates the significance of differences in median rather than mean scores across related groups using paired pre-post difference scores and ranking the differences first by absolute value and then signed values. W, the test statistic, is the smaller of the two ranked sums. A significant value indicates greater higher and positive (i.e., treatment gains) compared to lower and negative ranks. An adjusted p value (α = 0.5/3 = .012) was applied to analyses examining differences in FES domains to account for multiple statistical tests. The Common Language effect size statistic (CL; [44]) was calculated for all pre-post comparisons. The CL estimates the probability that a score randomly selected from the post-treatment group will exceed the score from the pre-treatment group.

Qualitative

Caregiver interviews were transcribed verbatim and analyzed using thematic analysis [42]. First, each transcript was read thoroughly. Then, each transcript was re-read and open-coded: each individual idea unit was assigned a descriptor based on the meaning of the passages. Each passage was also focus-coded for whether the valence of the comment was positive, negative, or neutral; what the comment referred to (e.g., content, formant, presenter style); and whether the comment discussed online programs. Finally, we sorted the data by the focused-codes in order to identify patterns among the open-codes. We followed guidelines by Morse [45] for rigor in qualitative inquiry including prolonged engagement with the data, rich description of the findings and analysis, developing a coding system, and triangulation.

Integration

The quantitative and qualitative results were integrated to answer research questions 1 and 2 by comparing the findings. Codes associated with transition knowledge and family empowerment were grouped. In order to expand the quantitative results, the full breadth of responses was presented. Areas of discrepancy and convergence are addressed in the discussion.

Results

Transition knowledge

Average scores for caregiver transition knowledge were significantly higher following the program [M_pre = 1.73 (SD = .87), M_post= 2.55 (SD = .67); W = 36.00, p = .01; CL = 100%]. Item-level differences are reported in Table 2. Caregivers reported the largest improvements in understanding high school graduation tracks, college and technical school options, issues related to legal and guardianship, and resources for community transportation. On the other hand, the smallest knowledge gains were reported for understanding transition planning in school and caregiver and child self-advocacy. That transition knowledge increased as a result of the program was also supported by caregivers’ interview comments that they struggled to access information outside the program. Although some teams had a good understanding of transition supports, others were less informed as evidenced in this response from Heather, mother of a 13-year old boy, “When I asked questions about things I learned in the program to my child’s academic support advisor, they didn’t know the same information.” Heather also commented on the challenge of getting access to information, saying, “It was the only program like that I’ve ever been to that I think gave real information. I’ve gone to a few of the meetings at school where they talk about things that they have to help kids…They ‘don’t seem to cover, like, meat, if that makes sense.” Susan, mother of a 16-year-old girl, commented, “No one has ever talked to us about the transition. It is instantly better [than the information we have already received]. Really, the concept of transition had not come up yet in high school.”

Table 2. Item-level differences in caregiver transition knowledge.

Item	Pre M (SD)	Post M (SD)	Δ
General adulthood and transition	1.90 (1.10)	2.50 (0.97)	+0.60
Transition planning in school (e.g. IEP^a)	2.20 (0.92)	2.60 (0.97)	+0.40
Understanding diploma vs. certificate of completion	2.00 (1.63)	3.20 (.79)	+1.20
Caregiver advocacy	2.60 (1.63)	3.10 (0.74)	+0.50
Child self-advocacy	2.00 (1.05)	2.50 (0.53)	+0.50
Independent living/housing options	1.10 (0.99)	1.90 (0.88)	+0.80
Community transportation	1.30 (1.06)	2.30 (1.06)	+1.00
Recreation activities	1.50 (1.18)	2.30 (1.16)	+0.80
Employment options	1.20 (0.79)	2.00 (0.94)	+0.80
College/technical school options	1.50 (1.18)	3.00 (0.94)	+1.50
Legal and guardianship issues	1.67 (1.66)	2.70 (1.06)	+1.03

^aIEP: Individualized Education Program.

Family empowerment

After participating in the program, caregivers reported improvements in their sense of empowerment concerning their family, which approached significance [M_pre = 45.70 (SD = 8.08), M_post= 47.30 (SD = 5.72); W = 26.50, p = 0.03; CL = 85.7%]. There were small increases reported for empowerment surrounding service systems [M_pre = 49.80 (SD = 6.27), M_post= 50.10 (SD = 5.84); W = 17.00, ns; CL = 62.5%] and community/political issues [M_pre = 31.00 (SD = 7.44), M_post= 32.60 (SD = 5.99); W = 22.00, ns; CL = 71.4%], but differences were not significant. That caregivers had an increase in empowerment as a result of the program was also suggested in the interviews as caregivers talked about how frustrating and disempowering the transition process can be. Caregivers reported that the transition process has many technical details and that they are in need of information and guidance. Rhonda, mother of an 18-year-old boy enrolled in 12^th grade, explained how insider information is needed: “nobody expects you to understand SSI [Supplemental Security Income]. But you can at least say“, "Okay go to Social Security and apply for it. And if you get rejected, apply again. There’s always little tricks.” Heather talked about how the program empowered her to help other caregivers as reflected in these comments, “I have become more educated about what planning can be, what planning there is…it made me aware that I can help other people I know with this information.”

Feasibility, acceptability, and usefulness

In terms of feasibility, caregivers commented on the time needed to attend the program. Although the program was considerably shorter than other caregiver education programs, the time was still a barrier. For example, Broam, father of a 14-year-old boy, said, “I really appreciated everything that was said, it’s just, it was a lot of time and time away from work…I have an hourly job, so, I try to think of all those other people out there who have hourly jobs who ‘can’t afford to miss it. Or aren’t allowed to.” On the other hand, Heather suggested, “Some reflection around personal situations or even following up with one-on-one coaching or transition coaching after all the information would be a really nice touch. Incredibly time-consuming but that could be a really nice add on afterward.” Caregivers were also asked to comment on the potential feasibility of similar training being offered as a webinar. Responses were mixed, with some caregivers indicating they were less included to complete webinar-based training, and many caregivers commenting that a website would be helpful for accessing handouts and webinars that provided more detail about information covered in the program.

In terms of acceptability, participants indicated that the program provided valuable content. Specifically, the topics of guardianship, alternative learning placements, post-secondary services, the transition planning process, local resources, benefits, housing, and employment were mentioned as important. Additionally, caregivers appreciated the comprehensive nature of the program. For example, Heather indicated: “I think my biggest takeaway was the breadth of options.” Susan described how the information helped her to consider additional topics, saying, “I get so wrapped up academically and thinking my gosh if ‘he’s only attending one class a semester at the community college, what does she do with the rest of her time? That was inconceivable to me. Then’ it’s like well actually, maybe what she does for the rest of her time is she volunteers at the library and then between the two she decompresses. And that’s cool.” Although the majority of the comments suggested the content was the strength of the program, there was some indication that the information was not individualized enough. For example, Heather said, “It was a lot of information and so it became … from an instructional perspective it became just a flood of information without a lot of explicit time spent saying, okay of these four options, this is what I might do.”

In terms of usefulness, caregivers indicated that there may be differences in how useful the content was depending on their child’s age and stage in the process of transition. For example, Rhonda suggested the program reinforced the path that they were on, “I think I was sort of down a path by the time I went. I was just kind of there to see if there was anything I missed…I think it sort of confirmed.” Another caregiver, Joseph, parent of a 15-year-old boy enrolled in 9^th grade, commented on the timing by saying, “So the transition to high school stuff we had already done. So, for me, that was a little bit of repeat.” Some caregivers indicated that they had no other access to transition information, such as Susan, who speculated why her child’s school had not provided any guidance on transition after being asked if the information is different than what she had received, “Completely different. I am surprised at how little school has provided. And maybe ‘it’s because school hasn’t really realized just how, I mean I think that all this is coming along is’ we’re all just kind of realizing like wow, maybe she is way more impaired than we ever thought.”

Discussion

Approximately 100,000 autistic youth reach adulthood each year in the US [4], and outcomes for these youth are often concerning, including low rates of employment, participation in postsecondary education, and independent living [6,7]. Families play a key role in preparing autistic youth for the transition to adulthood as they are the most salient change agents for these youth and often the de facto navigator of this transition as a function of limited programming related to transition offered by schools and community agencies [12]. In recent years, some interventions have been developed and show promise for improving youth and family attitudes and knowledge regarding transition-related topics and outcomes (e.g., [12,15]). However, resource scarcity on the part of families, schools, and community agencies that might implement such programs will likely reduce success of scalability efforts in many communities. The PLOF intervention is a short-term, caregiver education program designed to address limitations to available transition-focused family supports for autistic youth. The current study sought to evaluate the preliminary promise and feasibility of the PLOF intervention. This evaluation uniquely provides evidence for community developed and implemented transition education rather than a tightly controlled, research-initiated caregiver training.

Findings support the initial promise of PLOF in improving caregivers’ knowledge of transition-related topics, as caregivers reported significantly greater overall transition knowledge following participation and the effect on knowledge scores was large. These results are notable given the small sample size of this initial pilot study and short-term duration of the intervention, though more research is needed to confirm these findings in a fully powered study. It is possible that caregivers of transition-age autistic youth are able to use their typically strong schema for the child service system to quickly consume and retain information related to adult services. Item-level data suggests that the largest gains in knowledge were experienced in topics concerning current and future educational planning for youth, particularly differentiating the diploma and certificate of completion “tracks” available to youth as they complete high school and understanding various options for postsecondary education following high school completion. The facilitator’s broad knowledge in these topics, as well as their familiarity with specific practices across local school districts and universities, likely contributed to these gains. Alternatively, caregivers reported the smallest gains in knowledge related to school-based transition planning and child and caregiver advocacy. It is possible that caregivers entered the program with the relatively greatest knowledge in school-based transition planning. The program was advertised through school-based caregiver support groups, and participating caregivers may have already had a strong foundation in this topic from accessing related support in the past. Small gains in advocacy skills may be related to the brief nature of the program; it is possible with more exposure to the content areas and opportunities to practice their own advocacy and encourage this in their children, caregivers would report greater gains in this area. Again, replication is needed with a larger sample to better understand the efficacy of PLOF in increasing caregiver transition knowledge. Recent research surveying families of autistic youth accordingly identified these issues as being among the highest prioritized by caregivers [46].

Findings also suggest caregivers may have felt more empowered around issues concerning their family following program participation. It was clear from participant comments that these families were connected to other families with autistic children and felt empowered to be a resource in their informal networks. Significant increases on the FES family empowerment construct following PLOF participation suggest that caregivers derived additional benefit in terms of their sense of competence in managing daily home life [37]. This sense of competence is in reference to tasks such as their ability to solve problems for their child, capitalize on their child’s strengths and support their child’s growth. It is possible that not only the information shared during PLOF but the opportunities for caregivers to share their experiences and learn from one another during discussions contributed to an increased sense of competence. A family-focused approach and opportunities for help-giving, two components that were embedded within the PLOF program, may play a role in shaping caregiver empowerment [47]. Group discussions allowed time for caregivers to ask clarifying questions and gain specific recommendations (e.g. for certain agencies). Additionally, caregivers of older youth were able to share their wisdom with caregivers of younger youth, which may have further contributed to increased sense of empowerment. Taylor and colleagues [15] reported significant increases in overall empowerment among caregivers of transition-age autistic youth within two years of high school graduation following a 12-week caregiver advocacy program. The effect of the intervention on caregiver empowerment was large, suggesting clinically meaningful improvement in this construct for caregiver participants. Similar increases in caregiver empowerment found in the current study and large effects particularly for empowerment related to family issues suggest that this construct is malleable to participation in transition-focused education. Given the relatively shorter duration of PLOF compared to the comprehensive program evaluated by Taylor et al. [15], the effect size findings are notable. Still, optimal PLOF implementation may be in conjunction with other services such as school-based transition supports, to provide caregivers with more opportunities to apply the knowledge gained and advocate for appropriate supports in collaboration with other providers such as special education teachers and transition specialists. Future research is warranted to determine the optimal caregiver engagement needed to establish meaningful effects on empowerment following transition-focused training.

Many commonly used indicators of intervention feasibility suggest PLOF is feasible as implemented in this initial evaluation. The intervention was implemented through a single day, 4-h program held in a community location. There were no costs associated with securing space for the program since the community partners working with the clinician implementing PLOF assisted in securing space that could be reserved for free. Nominal costs were incurred to provide breakfast and lunch for participants, as well as printed handouts. The interviews with caregivers revealed the challenges of providing caregiver education. Caregivers have a variety of different needs, expectations, preferred learning styles, and resource demands. There was a clear tension between the complexity of the transition process in terms of the breadth of information needed, the support needed to understand the information, the expertise needed to apply the general information to their individual situations, and the resources needed to carry these intentions out. For those beginning the process, the program seemed to open the door and provide guidance for starting on the path. For those who had been navigating the transition, the program reminded them of the challenges, provided and reinforced information, but could not provide solutions. The nuance the caregivers in the study provided has not been suggested in researcher-controlled evaluations of caregiver-focused transition education programs (e.g. [15,48]).

In total, the results of this initial feasibility study suggest that the PLOF intervention can be reasonably implemented using few resources, in a format that is considered acceptable to caregiver consumers. Moreover, improvements in caregivers’ overall knowledge of transition-related topics and sense of empowerment concerning their family life are promising considering the small sample size and short duration of the program. Findings are similar to gains reported in other studies following caregiver participation in multi-week, relatively intense interventions (e.g., [11,15]). The use of participant feedback for iterative program improvement is critical for designing effective and sustainable programs [49]. Caregiver feedback will inform adaptations of PLOF, including offering a beginning and advanced version of the training to better meet caregiver needs at different stages of the transition process, and testing the addition of follow-up consultation to help caregivers apply the information while navigating transition processes.

Limitations and future directions

Study findings must be considered in light of several methodological limitations. Given this was a small and under-powered pilot study, more research is needed to ensure replicability of the current findings in larger samples and comparability to other research. Likewise, the Transition Knowledge measure was developed for this study and requires further evaluation to establish its reliability and validity. Additionally, while PLOF was shaped using the experiences of the developers in working with diverse autistic adolescents and young adults, and their caregivers, such individuals were not a part of the development team. Recognizing the critical need for inclusion of autistic people in research [50], it is recommended that future refinement and testing of PLOF include autistic adolescents and young adults, and their caregivers. Finally, future research on PLOF should include fidelity analysis to examine consistency of implementation across facilitators and sessions, and associations with participant outcomes.

Features of the sample should also be considered in relation to results. Participating caregivers reported high levels of educational attainment and family income, which may provide advantages in terms of successful transition planning for youth. Additionally, PLOF was implemented by one of its developers who had a substantial knowledge base in transition-related services and support. This knowledge included awareness of providers in the local community who could provide families with quality services. It is possible that caregiver outcomes were enhanced by anecdotal information shared by the clinician during delivery of the intervention which may hinder replicability of the results when implemented in novel contexts and by novel individuals. For instance, the clinician (third author) at times offered insight on strengths and drawbacks of different services, such as disability services offered at local universities. These additions also support the potential transportability of PLOF in other contexts. Practitioners familiar with the landscape of autism services can infuse regionally-specific and culturally relevant information to best match the needs of differing contexts throughout the program. PLOF focuses primarily on the changing environments of autistic youth as they enter adulthood and facilitates caregiver planning for the roadmap most relevant to their youth’s unique profile, allowing for the individualization supported by reviews of research featuring perspectives from the autism community [33]. Future research on PLOF should employ fidelity analysis that allows for evaluation of implementation variables and considers such variables to contextualize outcomes. Finally, while the intervention was widely advertised to multiple caregiver groups, a relatively small number of caregivers presented for each session. It is possible that the half-day time commitment was still too onerous for caregivers, particularly those employed full time. It is noted that caregivers highlighted the complexity surrounding transition preparation; a single-day program is unlikely to be sufficient in producing positive outcomes for youth but may have substantial utility when added to existing services such as school- or community-based transition planning.

Future research should consider methods to increase access to PLOF, such as web-based delivery and flexible scheduling options such as offering both weekend and weeknight sessions. Development of web-based components should be informed by caregivers given feedback garnered in this study that suggested online content that reinforces topics introduced in the face-to-face program may be preferable to delivering the entire program virtually. Web-based follow-up coaching sessions should also be considered to provide more individualized support. Virtual service delivery is considered potentially beneficial even for caregivers who can attend the program in person. A systematic review of online dissemination of resources to parents of autistic children identified parents turn to the Internet for information seeking and support, but there is a lack of consistently reliable information [51]. Comments from caregivers in the current study suggested a temporal aspect to when information was perceived as helpful and needed. It is possible that continuous availability of resources would increase benefits to families by allowing them to access information at the point in their child’s life that is most pertinent to their individual situation.

Conclusion

In light of the substantial number of autistic youth transitioning into adulthood each year, the current study sought to evaluate the feasibility and potential promise of a short-term, low-cost intervention to educate caregivers about transition-related processes, supports, and services. Using a partially mixed sequential equal status design [40], evidence was found for the feasibility and initial promise of the program in improving caregiver transition knowledge and sense of family empowerment. More research is needed to derive additional support for the program with more highly controlled research designs, especially those using participatory approaches to center autistic youth when developing and evaluating programs that meet their needs [52].

Disclosure statement

Dr. Suzi Naguib is the Clinical Director and Owner of Sunfield Center and provided the program cost-free as part of the Center’s community outreach services.

Additional information

Funding

The author(s) reported there is no funding associated with the work featured in this article.