Engaging Siblings of Adults With Autism in Future Planning
Phase: NA
Conditions: Autistic Disorder
Sponsor: Boston University Charles River Campus

 
 
 
 
 
 
 
Study Protocol For 
R34MH111489 - Engaging Siblings of Adults with Autism in Future Planning 
Version Date: February 1, 2016 
 
 

SIGNIFICANCE 
 
The Existing Service Delivery System is Inadequate to Meet the Needs of Adults with Autism 
The current service delivery system is not adequately poised to meet the needs of the aging population of 
adults with autism spectrum disorder (ASD). We are in the wake of an emerging and pressing public health 
crisis, with current prevalence estimates of 1 in 68 children with an ASD.1 In the next decade, over one half 
million youths with ASD will enter adulthood.2 Few empirically-based, high-quality services are accessible to 
adults with ASD, despite their ongoing need for such services across multiple sectors. ASD symptoms are 
persistent and pervasive across the life course and include behavioral challenges, comorbid medical and 
psychiatric conditions, and marked difficulty in adapting to changing circumstances.3-6 These ASD-related 
characteristics have documented impacts on appropriate service receipt and on the family. 
 
Future Planning is Necessary to Ensure Adequate Service Participation among Adults with ASD 
Due to an unavailable, inaccessible, and uncoordinated service system, families play a large role in service 
coordination for adults with ASD.7,8 Responsibilities associated with navigating complex systems of care, 
coordinating care across systems, and advocating for services frequently falls on family members (mostly 
parents).9 Yet, families often express insufficient knowledge of available services and lack of clarity on the 
process for engaging with these services, which impedes taking action on future planning. Future planning can 
also be delayed for emotional reasons (e.g., facing the possibility of relying on outside supports as the family 
ages). Poorly-coordinated services are associated with poorer functional outcomes across domains of 
functioning for the adult with ASD.4 Thus, lifespan approaches to service planning require attention to both 
short- and long-term goals, and barriers to carrying out these goals must be proactively addressed. Families 
would benefit from programs to help them identify and address practical and emotional barriers to future 
planning. Yet, few interventions are available to support families in this process.10 
 
Siblings are Well Positioned to Assume a Central Role in Future Planning 
Siblings are the future generation of caregivers and often become the guardians for their brother/sister with 
ASD when parents are no longer able to provide care due to illness or death.11 Yet, siblings are absent from 
the empirical literature focused on adult services in ASD. Siblings are a logical choice for providing lifelong 
support for their brothers/sisters with ASD. Sibling relationships typically last the longest of all human 
relationships,12 and adult siblings often possess unique and important information about their brother/sister 
with disability.13 Despite the behavioral, social, and communication difficulties of ASD that can disrupt sibling 
intimacy,14 siblings are socializing agents who provide social support to their brother/sister with disability.15,16 
Siblings are often less protective than parents17 and therefore better able to promote independence in the adult 
with ASD.16 Most adult siblings of individuals with disability anticipate that they will provide more support in the 
future.18 Many want to be involved in future planning but report that they are often not included.11,19 Indeed, 
adults who have a brother/sister with disability expressed that they wanted: (1) to be included in future 
planning; (2) information and support on future planning, including financial and legal planning, guardianship 
transitions, estate planning, and help with system navigation; and (3) strategies for approaching parents to 
begin the dialogue about contributing to future planning.19 These findings are consistent with our preliminary 
work (see below) and led to the proposed project.  
 
Systematic Barriers Limiting Sibling Involvement in Future Planning can be Addressed 
The longevity of sibling relationships and siblings’ desire for more meaningful involvement in planning 
suggest that siblings are an untapped resource with the potential to provide consistent support over the life 
course for adults with ASD. A scoping review of caregiver support programs identified 14 governmental (e.g., 
care coordination and home/financial supports) or psychosocial programs.10 Three of the four psychosocial 
programs focused on serving aging parents,20-22 and only one (“Future is Now”) included adult siblings in future 
planning.23 Family members who participated in “Future is Now” completed a letter of intent (non-legal 
document that includes family information and future preferences), were more likely to initiate residential 
planning and developing a special needs trust, and reported decreased caregiving burden. Although the 
program was inclusive of siblings, only 1 of the 28 family caregivers in the intervention group was a sibling.23  
The low rate of sibling involvement in “Future is Now” contrasts research documenting siblings’ desire to be 
involved in future planning11,18,19,24 and guided our preliminary research to better understand the reasons 
underlying siblings’ limited participation in future planning. Our findings were consistent with previous work 
showing that (1) parents may not want to “burden” other children in the family and would prefer to let them live 
their lives (2) adult siblings may not live in close proximity to parents and/or their brother/sister with disability, 
(3) services described as “family-centered” often only include parents, and professionals are encouraged to 
collaborate with parents, not siblings and (4) siblings report limited knowledge and fear of complex service 
systems.25-28 In response, we have begun to develop a program that specifically addresses these barriers to 
sibling participation in future planning.  
 

Siblings FORWARD is Expected to Engage Siblings and Improve Long-Term Outcomes of Adults with ASD 
The goal of the proposed research is to engage adult siblings in the process of person-centered future 
planning for their brother/sister with ASD. Siblings FORWARD (Focusing on Relationships, Well-being, and 
Responsibility aheaD) targets common barriers to sibling involvement in family future planning, including 
improving family communication around difficult topics, increasing siblings’ knowledge of and confidence in 
accessing ASD service systems, and anticipating and proactively problem-solving barriers to future planning. 
We are developing this program in close collaboration with family support personnel who work in local Arc 
chapters – the typical service settings for families – to increase the program’s usefulness and acceptability 
among providers who would implement the program on a larger scale in the future. Siblings will participate in 
individual, personalized telehealth modules to address barriers related to geographical separation. Adults with 
ASD will collaborate to the extent possible to ensure a person-centered approach. The program is flexible in 
order to be account for marked heterogeneity across severity ASD of symptoms, patterns of strengths and 
limitations, developmental trajectory, and functional status.29 Participating siblings will create a plan of action 
that will be highly individualized and informed by the characteristics and service needs of the adult with ASD, 
his/her current degree of involvement in ASD services, and family context and values. 
Figure 1 illustrates the conceptual model and anticipated outcomes of the Siblings FORWARD program. In 
this formative stage of research, we will focus on engaging the program targets that are hypothesized to 
mediate longer-term program benefits. These targets include siblings’ skills, knowledge, self-efficacy, and 
behaviors (creating and implementing a plan of action). Ultimately, greater sibling involvement in family future 
planning will result in optimal independence and functioning in adults with ASD, through more seamless 
continuity of care across the life course of the adult with ASD. 
 
 
 
 
 
 
 
 
 
 
 
 
  
 
The Proposed Program is Closely Aligned with Research Priorities for Services for Adults with ASD  
The proposed research will develop and test a program to improve future planning for adults with ASD as 
parents age and adult siblings assume greater caregiving roles, in close collaboration with the Arc at the 
national, state, and local levels. This application focuses on several research objectives outlined in RFA-MH-
17-205 (ServASD II: Pilot Studies of Service Strategies for Adults with ASD), and accordingly addresses key 
research objectives of the 2013 Interagency Autism Coordinating Committee’s (IACC) Strategic Plan for ASD 
Research.30 This proposal responds to the RFA’s objectives to test the effectiveness of (1) “strategies to 
support families in accessing and navigating complex multi-sector systems of care, including increasing 
capacity to find or effectively advocate for services and to create informal supports and services for adults with 
ASD” and (2) “provider- and systems-level strategies in facilitating receipt of services and coordination and 
continuity of care for adults with ASD.” The proposed work is further aligned with the IACC’s aspirational goals 
of developing high-quality, evidence-based community services and supports across the lifespan of individuals 
with ASD and maximizing their potential to live self-determined lives in the community of their choice through 
school, work, community participation, meaningful relationships, and access to necessary and individualized 
services and supports. In this regard, siblings’ continued presence across the lifespan, provision of social 
support, and tendency to promote independence in the adult with ASD makes them a strong choice for future 
planning. The program is person-centered and flexible to accommodate heterogeneity in ASD presentation.  
 
 
INNOVATION 
 
Siblings: To our knowledge, this is the first program that specifically targets adult siblings in future 
planning. Siblings’ enduring presence in the life of the adult with ASD and their documented interest in 
assuming a central role in future planning make them a logical choice for family engagement efforts, 
including envisioning and coordinating services across multiple systems. 
Siblings 
FORWARD 
Program 
Program Targets: 
Sibling Skills & 
Knowledge 
- Problem-solving skills 
- Communication skills 
- Self-efficacy 
- Perceived barriers to 
future planning 
- Knowledge of services 
& delivery systems  
- Knowledge of family 
future plans 
Longer-term 
Outcomes for 
Adult with ASD 
- Maximum  
independence 
- Optimal 
functioning 
across functional, 
behavioral, 
social, and 
occupational 
domains 
Sibling 
Behavioral 
Outcome: 
Future Planning  
- Development & 
implementation 
of a future plan 
of action 
 
 
Figure 1 
Proximal 
Outcomes for 
Adult with 
ASD: 
- Decreased 
unmet service 
needs  
- Improved 
quality of life 
- Enhanced 
family 
relationships 

 
Telehealth: Telehealth approaches have been occasionally used in small studies of parents of young 
children with ASD,31-36 CBT intervention for adolescents with ASD;37 or ASD diagnosis in children38 or 
adults.39 Yet, telehealth approaches remain rare in ASD research and have not been examined in the 
context of adult ASD services. Telehealth addresses the geographical and practical considerations of a 
sibling-focused program, which is expected to lead to increased accessibility, acceptability, and 
participation. The low cost, clinical utility, and potential for widespread adoption is perceived as valuable to 
our community partners (see Support Letters). 
 
Community-Based Design: Community partners have already contributed to the design and aims of the 
proposed work and will continue to take a central role across all stages of the research design, 
implementation, dissemination, and future directions. Community input has been gleaned from 
professionals representing the Arc at the local, state, and national levels; an adult with ASD; young- and 
middle-adult siblings of individuals with ASD; parents of adults with ASD; and community organizations 
representing adults with ASD (e.g., AANE) and siblings (Sibling Leadership Network). This intensive 
community involvement is expected to considerably increase the degree to which our program targets 
relevant topics/skills in an acceptable format that has the potential for widespread uptake among providers 
who serve a heterogeneous group of families with ASD and similar disorders. 
 
Individualized Approach. We have designed a person-centered program that incorporates the adult with 
ASD and allows for a flexible approach informed by aspects of the ASD presentation, individual service 
needs, values, and family considerations. This individualized approach is expected to increase the utility of 
the intervention for all families served within community settings, regardless of their specific needs.   
 
 
PRELIMINARY STUDIES 
The research team has complementary expertise (Table 
1). The proposed project is informed by the PIs’ past research 
on siblings and by recent investigation into the barriers to 
future planning experienced by adult siblings. Dr. Long’s work 
with 8- to 17-year-old siblings of children with ASD showed 
that siblings as young as age 8 are already planning for their 
future caretaking roles, particularly in Latino families.40 Similar 
findings have been found in Dr. Orsmond’s work showing that 
60% of adult siblings expected to assume primary caregiving 
responsibility for their brother/sister with disability in the 
future.41 Higher sibling involvement was found among 
sisters,41 in families with greater closeness,41 and when the mother had declining health.42 Competing family 
responsibilities (e.g., young children at home) limited siblings’ involvement,41 suggesting the need for a flexible 
approach (e.g., telehealth). 
Some siblings of individuals with ASD may need more personalized support to be effectively involved in 
future planning. Dr. Orsmond’s research highlights the unique needs and risk factors of adolescent and adult 
siblings who have a brother/sister with ASD, including siblings’ higher rates of distress, particularly when 
siblings exhibit features of the broader autism phenotype (BAP), experienced family stress, and when the 
brother/sister with ASD had more severe behavior problems.43,44  
In preparation for the proposed research, we conducted focus groups, interviewed service providers, and 
engaged a sibling in future planning as a case study. In focus groups of parents of transition age youth with 
cognitive, emotional, or social challenges, mothers discussed sibling involvement in the future. They articulated 
anxiety about the future of their son/daughter with disability but expected that siblings would assume 
caregiving responsibility. One mother expressed a commonly shared sentiment: “We never would put it on her. 
It's not her responsibility. But I know she will be there for her.”  
Interviews with service providers highlighted the challenges of involving adult siblings in future planning. 
Consistently, family support personnel at local Arc chapters reported that they worked with siblings at the time 
of parental illness/death or afterwards but emphasized the need to engage siblings proactively. There was 
overwhelming enthusiasm for creating Siblings FORWARD and offers to assist. Interviews highlighted: (1) the 
timeliness due to increases in services needed to support adults with ASD; (2) the need to connect with 
siblings before family crisis; and (3) that the proposed program fit within the scope of services provided by 
family support personnel at the Arc. In addition to national trends, recent legislation in MA has greatly 
increased the number of adults with ASD who are eligible to receive services from the Department of 
Developmental Services; thus, providers expect a phenomenal increase in demand for adult ASD services.  
Finally, a case study examined the experience of a 24-year-old sister who used a new online tool (Build 
your PlanTM) available through the Arc’s Center for Future PlanningTM. This sibling is motivated to become 
more involved in family future planning for her older sister who is non-verbal, uses a wheelchair, and lives in 
Table 1: Expertise Matrix 
Content 
Adults with Autism 
Orsmond 
Siblings  
Orsmond, Long 
Autism Service Delivery 
Community Adv. Board 
Methods 
Community Partnerships 
Long 
Qualitative Methods 
Long 
Intervention Development 
Orsmond, Long, Comer 
Telehealth 
Comer 

the family home. She is concerned about the lack of long-term residential plans. Although it is advertised as 
involving siblings, the Build your Plan tool was perceived to be exclusively designed for parents (e.g., all 
questions referred to “your son or daughter”). She reported that the tool prompted her to think about some new 
issues (e.g., guardianship, financial planning), but that the resources suggested were not specific enough to be 
helpful. She expressed anxiety when the website led her to local resources that were non-existent. The tool did 
facilitate engagement in future planning with her mother; she had to ask her mother for information, and the 
two of them learned new financial planning information when exploring the tool together. But, she did not 
approach her father about future planning because she said he “tended to get emotional when discussing the 
topic.” She stated she would like strategies for how to approach him. After 6 weeks of individual planning, she 
identified two positive outcomes: (1) her parents made an appointment with a special needs lawyer and (2) she 
planned to contact and visit one residential option. In sum, possible gains of engaging with the planning tool 
were offset by increased anxiety, perceptions of limited helpfulness, and remaining needs in terms of skills for 
communicating with parents and problem-solving barriers to identifying and obtaining necessary services. 
 
 
APPROACH 
Overview 
The goal of the proposed research is to develop and evaluate the Siblings FORWARD program using 
behavioral telehealth technology. First, we aim to develop the 6-session Siblings FORWARD program in 
collaboration with community organizations. Siblings, adults with ASD, and community providers will give 
feedback on the proposed program through focus groups and/or individual interviews. Second, feasibility of the 
Siblings FORWARD program will be evaluated through an open trial (N=5 families). We will assess recruitment 
capability, appropriateness of outcome measures, program acceptability, and viability of the procedures. 
Finally, we will conduct a pilot randomized controlled trial (RCT) (N=36 families) to examine effects on the 
proposed targets and whether sibling involvement led to the creation of a plan of action for future planning.  
 
Sample & Recruitment 
 Community Advisory Board. Future planning for adults 
with ASD is complex due to the multiple systems of care, 
frequent perceptions of unmet needs, legal and ethical 
considerations, and emotional aspects. This complexity 
increases the challenges of creating a program such as 
Siblings FORWARD and will require early and frequent 
involvement of stakeholders with experiences relevant to 
adults with ASD. Thus, the first step of the proposed 
research will be to engage members of the community 
advisory board (CAB). We have assembled a team with 
personal and/or professional expertise related to adult ASD (Table 2). These individuals have already agreed 
to serve on the CAB (see Support Letters); therefore, meetings will commence immediately if the project is 
funded. The CAB will meet quarterly during the project in order to (1) provide feedback on initial drafts of the 
program content and implementation plan, including identifying unanticipated barriers, (2) strengthen our ties 
with the community in which the intervention will be implemented currently and in the future, and (3) ensure 
community acceptability to support future implementation and dissemination. To ensure the quality of feedback 
and strength of relationships, CAB meetings will be held in-person at a convenient time and location. 
Service Providers. Five focus groups will be conducted (N=6-8 members in each group) to obtain feedback 
on the content and format of the program, including three focus groups with adult siblings and two with 
providers experienced in serving adults with ASD and their families. Service providers will be recruited 
primarily through local Arc organizations (e.g., family support staff). There are 10 Arc chapters located within a 
30-mile radius of Boston; we will also conduct service provider focus groups at the Arc’s national convention. 
This is adequate to ensure a sample size of 12-16 providers for focus groups.  
Siblings and Adults with ASD. Siblings will be enrolled in three focus groups (N=18-24), the open trial (N= 
5), and the RCT (N=36). For focus groups, siblings who live in the greater Boston area will be enrolled. For the 
open trial and RCT, siblings will be enrolled regardless of their geographic location; this is possible due to the 
telehealth delivery format. Sibling inclusion criteria include (1) one or more adult brother(s) or sister(s) with 
ASD who are either biologically related and/or were raised in the same family of origin (e.g., adopted, step, or 
foster siblings), (2) age 18+, and (3) English fluency. Siblings will be excluded if they have a disability that 
would interfere with their ability to engage meaningfully in future planning for the adult with ASD. Adults with 
ASD (N=8-10) will participate in individual interviews during the first stage of the project and will complete self-
report measures during the open trial and RCT if capable (with support if needed). Inclusion criteria for the 
adults with ASD include (1) an ASD diagnosis, (2) an adult brother/sister (i.e., a sibling), (3) age 21+, and (4) 
Table 2: Community Advisory Board 
Name 
Expertise / Role 
Stephen Shore 
Adult with ASD 
John Kramer 
Adult sibling; Co-founder of Sibling 
Leadership Network 
Daniela Caruso 
Parent of youth with ASD & lawyer 
Kerry Mahoney 
Arc of Massachusetts 
Michelle Alkon 
Director of Adult Services, AANE, & 
parent of youth with ASD 

English fluency if verbal. For the focus groups, adults with ASD will be excluded if their abilities would preclude 
participation in an interview about future planning (e.g., due to significant cognitive or language challenges). 
Across the three phases of the proposed research, 59-65 families will be enrolled. A sample size range 
allows for flexibility with regard to saturation of qualitative data. For the focus groups, siblings will be recruited 
through local Arc chapters, the Massachusetts Sibling Support Network (MSSN), Asperger/Autism Network 
(AANE), and at the National Arc convention (see Support Letters). For the open trial and RCT, siblings will be 
recruited via local Arc chapters and the MSSN. We will primarily partner with the Northeast Arc (Danvers, MA) 
and the Brockton Area Arc (Brockton, MA) for recruitment for the open trial and RCT. These two chapters were 
chosen due to the presence of family support programs, outreach to siblings, and higher racial, ethnic, and 
economic diversity in their families served. If needed, we will recruit outside of the service system (e.g., 
through local media, universities, and listservs). 
 
Procedures 
Focus Groups and Individual Interviews. The first phase of data collection involves focus groups with 
siblings, separate focus groups with service providers, and individual interviews with adults with ASD. Focus 
groups will be held at local Arc locations to maximize convenience for participants. The focus groups will aim to 
understand current planning, including: (1) siblings’ knowledge of their families' current approach for future 
planning and the presence of services to support them through this process, (2) domains which should be 
included in future planning (e.g., medical, mental health, guardianship, living situation, vocational/volunteer 
involvement, financial planning, etc.), (3) barriers to sibling involvement in family future planning; (4) changing 
needs of the adult with ASD as he/she and parents age, (5) families’ approaches to communicating about the 
future, and (6) nature of siblings’ current involvement. Focus groups also will probe siblings’ and providers’ 
perceptions of Siblings FORWARD, including: (1) their enthusiasm for a program to engage siblings in future 
planning, (2) preferences for program components, format, and timing, (3) ideas on how to maximize flexibility 
so that the program has the broadest possible reach and benefit, and (4) ideas on how to incorporate the 
preferences of the adult with ASD (Appendix 1). Participants will be presented with an overview of the program 
and asked to provide feedback on the content, format, and materials.   
Adults with ASD will complete qualitative interviews at a setting of their choice (e.g., home, agency, study 
office). We will continue to enroll siblings, adults with ASD, and/or service providers until saturation is reached 
in the primary research questions (i.e., when more interviews do not generate additional information).45 The 
goal of the individual interviews will be to probe participants’ experiences with planning, preferences for sibling 
involvement in future planning, reactions to the program being developed, and ideas for how to best capture 
the input of adults with ASD when developing future plans.  
Focus groups and interviews will be recorded, transcribed verbatim, and checked for accuracy. Transcripts 
will be entered into a qualitative software program, NVivo11,46 to facilitate coding and analysis.  
Open Trial. Once the program is finalized, an open trial of 5 siblings will be conducted to identify and 
trouble-shoot barriers to implementation. This step is crucial due to the plan to utilize community providers to 
deliver the program in a telehealth format (see below). Each service provider will receive in-depth training on 
the principles and components of the program prior to implementation and will participate in weekly meetings 
to monitor progress, troubleshoot concerns, and receive intensive consultation on the program. Siblings will 
participate in the six-session program and will complete a battery of questionnaires pre- and post-participation 
and 3 months later (see Measures below). Siblings and service providers will participate in exit interviews to 
collect overall perceptions of the program, assess program satisfaction, and identify areas for improvement. 
Service provider fidelity to the program core components will be monitored and evaluated. 
RCT. The final phase of the proposed project will implement an RCT to examine whether the program is 
feasible and associated with improvements in the treatment targets (see Measures and Figure 1). Thirty-six 
siblings will be recruited and randomly assigned to participate in Siblings FORWARD (N=18) or receive written 
materials about future planning (N=18). Siblings assigned to Siblings FORWARD will complete Time 1 (pre-
program) measures, participate in the 6-session intervention over 4 months, complete Time 2 measures 
immediately after program completion, and complete Time 3 measures 3 months later. Those assigned to the 
control condition will complete Time 1 measures at the time of enrollment, Time 2 measures 4 months after 
enrollment, and Time 3 measures 7 months after enrollment. With the exception of the clinician rating of the 
sibling’s ASD symptoms (see Measures), all data will be collected by the Boston University study team via 
home visits in order to separate data collection from the Arc providers. Adults with ADS and their families will 
determine whether the adult with ASD can complete the questionnaires (see Methods). When possible, the 
adult with ASD will complete the measures independently in the presence of a Boston University research 
team member. These measures can also be completed with the support of a research team member, sibling, 
parent, or service provider. Given possible geographic separation, sibling data will be collected via mailed 
questionnaire packets. We will track this data collection method to inform future data collection logistics. 
 
 

Siblings FORWARD Program Description 
The goal of the Siblings FORWARD program is to increase siblings’ skills, knowledge, and self-efficacy to 
enable them to assume a greater role in future planning for their brother/sister with ASD. Program completion 
is expected to be associated with a higher likelihood of developing and implementing a future plan of action 
that includes short- and long-term planning goals. In turn, improved future planning is expected to be 
associated with longer-term improvements in unmet needs, quality of life, and family relationships for the adult 
with ASD (Figure 1). The Siblings FORWARD program will be delivered in six sessions over a 4-month period. 
Siblings will participate in all interactive online sessions guided by an Arc family support staff member; the 
adult with ASD will participate in one session, when possible. To increase future uptake and scalability, the 
program will be delivered by community providers with expertise in serving adults with ASD and their families. 
Sessions will equip sibling participants with concrete skills necessary to actively engage in future planning. 
Sessions follow a deliberate sequence starting with assessment of siblings’ current involvement and skills and 
motivational interviewing techniques47 to bolster siblings’ motivation for future planning; followed by instruction 
on skills related to communication48 and problem-solving;49 education about existing services and systems; 
application of problem-solving and communication skills to their plan of action; incorporation of the adult with 
ASD into the planning process; and final application of skills to the creation of a document outlining concrete 
next steps for the sibling’s involvement in future planning. Content is outlined in Table 3 and Appendix 2.  
 
 
Table 3: Program Description 
Target 
Description 
Session 1: 
Assessment 
& Motivation 
(Sibling) – 
75 minutes 
The initial session will assess the extent to which future plans are in place, the extent to which the sibling is informed 
about future plans, siblings’ perceptions of their own and their families’ motivation and readiness to engage in the 
process, family values regarding family roles and care preferences, and initial goals for sibling involvement in family 
future planning for the adult with ASD. This session will include a motivational interviewing component to increase 
siblings’ engagement with future planning. Finally, the sibling will draft a first version of their plan of action, including 
high-level goals. Between-session tasks: (1) learn about the family’s existing future plans (if any) and (2) refine their 
goals for program participation and role in the life of their brother/sister with ASD. 
Session 2: 
Family 
Commun-
ication 
(Sibling) – 
60 minutes 
Siblings will be taught to use effective communication skills with their family members (e.g., parents and the 
individual with ASD). The sibling will be given instruction in basic communication skills (e.g., using “I” statements, 
reading others’ body language, maintaining a collaborative tone, etc). Then, he/she will practice these skills in 
session by role-playing how they might talk to family members about their initial plan of action that was outlined in 
Session 1. The sibling will set specific goals regarding communicating with family members (parents, brother/sister 
with ASD, other siblings, etc.) about specific topics identified in session (e.g., financial planning). Between-session 
assignment: work toward meeting the family communication goals outlined in session. 
Session 3: 
Systems 
Navigation & 
Participation 
(Sibling) – 
60 minutes 
Siblings will be provided with psychoeducation about the continuum of care across community, residential, medical, 
mental health, and occupational/educational settings. Then, they will be taught strategies for effectively navigating 
and interfacing with these systems in order to support the individual with ASD, including prioritizing which service 
needs should be addressed initially and role-playing conversations with community organizations. Siblings will be 
provided with a packet of information regarding services for adults with ASD and a tip sheet developed specifically 
for siblings who engage in future planning. Between-session assignments: Review the informational packet and 
identify resources or domains that are most relevant. 
Session 4: 
Anticipating 
& Problem-
Solving 
Barriers 
(Sibling) – 
60 minutes 
Siblings will be taught skills for problem-solving, including narrowly defining a problem, identifying options, evaluating 
the likely outcome of each option, and selecting the most promising option. Problem-solving will be taught as an 
iterative process in which each attempt at solving the problem is evaluated to inform next steps. After learning the 
basic skill, siblings will be asked to identify potential barriers (practical or emotional) to implementing their plan of 
action and to problem-solve strategies to address the barriers. Finally, the sibling will be urged to set expectations 
and goals in preparation for the joint session involving their brother/sister with ASD (Session 5). Between-session 
assignment: (1) practice the problem-solving skill with additional barriers identified in session, (2) carry out one of the 
options selected during the problem-solving exercise (e.g., “ask Mom to sign a release of information form so that I 
can talk directly to Mario’s doctor”), and (3) invite family member with ASD to participate in Session 5, if appropriate. 
Session 5: 
Integrating 
the Family 
Member with 
ASD (Sibling 
& Adult with 
ASD) –  
60  minutes  
This session will involve the sibling and the adult with ASD to ensure that his/her preferences and values are a 
central consideration in the process of future planning. It is expected that siblings will utilize previously-learned 
communication and problem-solving skills, as well as knowledge of the systems of care relevant for adults with ASD. 
This session will be highly individualized, but the provider will play an active role in structuring the session and 
ensuring that the focus remains on future planning. Every effort will be made to incorporate the adult with ASD into 
this session. When the adult with ASD is truly not able to participate productively, the sibling will be asked to reflect 
on their perceptions of their brother’s/sister’s preferences (e.g., based on their responses to previous services or 
experiences). Between-session assignment: Revise their future goals and next steps to incorporate their 
brother’s/sister’s input, including identifying and problem-solving additional barriers. 

Session 6: 
Develop-
ment of a 
Sibling Plan 
of Action 
(Sibling) – 
60 minutes 
The program will culminate with the creation of a sibling plan of action outlining their involvement in family future 
planning. This plan will include long-term goals, proximal goals, and concrete next steps. Siblings will be asked to 
identify goals and next steps across multiple domains, including occupational/educational placement, residential 
placement, guardianship and legal issues, mental health, medical treatment, and financial planning. The siblings’ 
plan of action will be highly individualized and informed by their brother’s/sister’s specific ASD symptoms, 
developmental level, current involvement in ASD support services, and family context and values. Follow-up 
assignment: Carry out next steps on plan of action. 
 
 
Flexible Implementation. The program is designed to offer maximum flexibility with regard to family values 
and preferences for services, ASD severity and associated treatment needs, and geographic distribution of 
families. As such, the program will correspond to the unique needs and preferences of each participating 
sibling and his or her family. For example, siblings from families with strong cultural values emphasizing home-
based care may focus on exploring options for home-based support and problem-solving barriers to being the 
primary caretaker (e.g., the sibling’s own employment or family needs). For siblings from families that have 
already begun the process of future planning, siblings will focus on identifying next steps for the family future 
plan and problem-solving barriers that may interfere with moving the plan forward. In contrast, siblings from 
families who are reluctant to engage in future planning may focus on increasing motivation and processing 
emotional aspects of future planning. With regard to ASD presentation, we expect the adults with ASD to 
present with a wide range of functionality that will influence the nature of their service needs and their degree 
of involvement in Siblings FORWARD. In all cases, we will attempt to elicit their input. Adults with ASD who are 
able to participate will be asked to engage in collaborative planning with the sibling. For those who may not be 
able to do so, we will help the sibling explore other ways to take their brother’s/sister’s wishes into account, 
such as reflecting on their response to previous interventions or living arrangements. In families with multiple 
siblings, we will ask the family to identify one sibling to be the primary participant in Siblings FORWARD; 
however, other siblings will provide input via between-session conversations with the participating sibling.  
Focus Group and Open Trial Feedback: Examples of Protocol Modifications. The RCT will be informed by 
data collected during the earlier phases of the project. For example, if qualitative data reveals that the adult 
with ASD should have a more active role, we can incorporate him/her into more sessions earlier in the 
program. If the process of transferring knowledge from parents to siblings presents practical or interpersonal 
challenges, we may incorporate a joint parent-sibling session to address the emotional and practical aspects of 
caregiver role transitions. If the community providers are uncomfortable incorporating the telehealth 
technology, we may add more training sessions or provide additional technical support. If siblings and/or 
community providers do not have time to engage in the entire intervention, we may try to isolate the most 
important components and prioritize delivery of these components. We fully anticipate to encounter barriers 
and are prepared to update the program content, format, or delivery based on this feedback.  
Training & Fidelity. Fidelity to the program will be ensured in several ways: (1) the content and structure of 
the sessions will be standardized in a manual; (2) service providers will participate in intensive training for the 
Siblings FORWARD program covering conceptual foundations of the program, the experiences of adult 
siblings of adults with ASD, the current services available to this population, and tenets of culturally-sensitive 
care. Training will be provided for each session, with role plays to ensure standard delivery; (3) after training, 
all providers will participate in weekly consultation sessions with the PIs; (4) all sessions will be video recorded 
and used for consultation and to ensure that protocols are being implemented as intended; (5) all service 
providers will complete session content checklists following each session; and (6) 20% of session video 
recordings will be independently rated for adherence to the treatment manuals. We anticipate some provider 
attrition over the course of study implementation; intensive trainings will be held as needed with new providers. 
Control Condition. Currently, the standard of care is minimal sibling involvement in future planning or 
therapeutic activities for their brother/sister with ASD. Some organizations have created resources targeted 
toward parents (e.g., the Arc’s Build Your PlanTM tool), but our preliminary data show that these resources are 
often perceived by siblings to be minimally helpful and/or overwhelming, which serves to increase their anxiety 
and decrease the likelihood that they will take action. Several organizations have recently published “tip 
sheets” for siblings who wish to have a larger role in future planning. The extent to which these tip sheets are 
accessed by siblings or helpful as standalone resources is unknown, but they are frequently the only resource 
available to siblings. Given that tip sheets are inexpensive and easy to create and disseminate, it will be 
important for the proposed project to demonstrate that the outcomes of the Siblings FORWARD program 
warrant the extra time and resources. Therefore, the control condition will involve providing the same tip sheets 
and packet of information about resources for adults with ASD as those distributed in Session 3 of the Siblings 
FORWARD program. After all outcome data are collected from the program and control groups, siblings in the 
control condition will be offered the opportunity to participate in the Siblings FORWARD program. 

Telehealth Technology. Rationale: The Siblings FORWARD program will be delivered via synchronous 
videoteleconferencing (VTC) technology. VTC technology enables the secure delivery of interactive meetings 
that incorporate audio and video streams of data across multiple sites.50 The considerable growth of VTC 
interventions over the last few years has been bolstered by technological advances in VTC, portability of the 
technology, decreased costs, and increased internet access and technological literacy of the general 
population.51 This approach has been employed to overcome geographical barriers to care, which has led to 
increased availability, accessibility, and acceptability of mental health care delivered remotely.52 Although most 
telehealth research focuses on individuals, recent work supports the feasibility of family-based telehealth.52   
Application to Current Proposal: Common barriers to sibling involvement in future planning include 
geographical separation from the individual with ASD and/or parents and the sibling’s concurrent midlife 
demands (e.g., responsibilities to children, spouse, aging parents, or employer). The application of VTC 
technology will directly address these barriers and increase accessibility and program engagement. Most 
sessions will be delivered in a one-on-one format between the provider (in his/her office) and sibling participant 
(at home). In addition to audio and video streams, the VTC platform offers a shared desktop function in which 
both the provider and the sibling can view and edit documents in real time and access the documents between 
sessions to reinforce skills. This shared desktop function will be used to create program documents (e.g., the 
sibling plan of action). When the adult with ASD participates in session, families will have the choice of having 
the sibling and adult in the same room or setting up a 3-way VTC session. Finally, the ease of video recording 
will facilitate close consultation between the PIs and the service providers delivering the program. 
Equipment: Providers and sibling participants will each require hardware (computer or tablet with webcam 
and microphone), WebEx software, and a network connection. Hardware: Standard consumer desktop, laptop, 
or tablet systems are sufficient to implement the VTC software and have adequate visual display. The built-in 
webcams and unidimensional, dynamic-transducer microphones typical of most consumer computers are 
sufficient to implement VTC technology. Therefore, we expect that participants’ own computers/tablets will be 
sufficient to operate the VTC technology, but this will be measured as a feasibility outcome. If a participant’s 
setup does not meet these minimum specifications (outlined in Appendix 3), the study team will loan a tablet 
and 4 months of high speed internet access (see below) to the participant. Software: In line with 
recommendations to ensure utmost confidentiality, we will implement a standards-based (vs. consumer-based) 
application that incorporates firewalls, encrypts communications, and meets HIPAA regulations.50,53 Standards-
based systems adhere to publically-available standards set forth by the regulating bodies (e.g., the 
International Telecommunications Union standardization sector). A software-based codec (which encodes and 
decodes audiovisual data sent between devices) will be used to eliminate the need for additional equipment in 
the siblings’ homes; software-based codecs are associated with some AV quality loss but greater flexibility in 
use.50 Based on a review of existing VTC providers and the requirements of the proposed research, we plan to 
use WebEx software. More information about WebEx and associated security features is provided in Appendix 
3. Connectivity: Since VTC requires real-time exchange of AV information, the minimum bandwidth (i.e., the 
rate at which information is transmitted over an online connection) recommended for VTC is 384 kb per 
second.54 This minimum bandwidth is met with the basic plans offered by most internet providers.    
Implementation: The research team will ensure that providers’ and siblings’ computer set-ups are sufficient 
for the VTC technology (e.g., adequate display resolution, sufficient bandwidth, sufficient RAM to run the 
WebEx software, etc.; see Appendix 3). We have budgeted for 5 tablets that meet our minimum specifications 
and will loan these tablets to sibling participants, if necessary. Service providers will be given intensive, hands-
on training on how to implement the technology (see Appendix 3 for licensure considerations). Prior to the first 
program session, each sibling will participate in a brief session focused on the practical aspects of gaining 
familiarity with the WebEx technology. This introductory session is expected to minimize disruptions and 
increase engagement in subsequent, substantive sessions.52-54 
Expertise: Dr. Comer (consultant) is an internationally recognized expert on VTC technology in behavioral 
telehealth. He has authored 7 articles and obtained 4 grants focused on this methodology. He has used VTC 
technology in multiple research projects, including several collaborations with the PIs’ home institution, Boston 
University. He will oversee purchasing and implementing hardware and software, ensuring security, 
maximizing VTC functionality, and ensuring continued engagement and alliance with participants using this 
novel delivery approach. The Project Manager will work closely with Dr. Comer and will assume primary 
responsibility for ongoing maintenance of the equipment and incorporating updates to software and/or 
regulatory policies to ensure that the technology implementation remains current and maximally functional.  
 
 
Measures 
Siblings will complete all written measures unless indicated otherwise. Measures are organized according 
to baseline characteristics, treatment targets, and proximal outcomes expected to change as a function of 
program participation. Baseline characteristics related to the functioning of the adult with ASD (i.e., all except 

demographics) are also considered longer-term outcomes that are expected to improve over time but which 
are not expected to change within the time frame of the proposed data collection. In the current work, baseline 
characteristics will be used to characterize the sample. In future, larger-scale work, these variables will be 
examined as possible moderators of treatment effectiveness. 
 
Baseline Characteristics (Measured at Time 1) 
1. Demographics. Family demographic questions include race/ethnicity, gender, family membership (age and 
gender of siblings), family income, native language, education and employment, and type and size of 
community. This information will be collected for the adult with ASD, sibling, and parent (when known). 
2. Adult with ASD: Autism Symptom Severity. Siblings will rate their brother/sister’s ASD symptoms using the 
Current form of the Social Communication Questionnaire (SCQ).55 The SCQ is a 40-item proxy-report 
measure used to assess the presence of specific autistic behaviors. The items represent three areas of 
functioning: reciprocal social interaction, language and communication, and repetitive and stereotypical 
behaviors, where higher scores indicate more severe behaviors. The SCQ has established psychometric 
properties in children and adults and has good reliability and convergent validity.56,57 The SCQ manual 
provides additional information on factor analyses, item validity, and ROC analyses that support its validity. 
Psychometric properties are good, with alpha reliabilities ranging from .84 to .93 in older age groups.55 
3. Adult with ASD: Maladaptive Behaviors. Siblings will rate the severity of maladaptive behaviors exhibited 
by their brother/sister with ASD using the Scales of Independent Behavior-Revised (SIB-R).58 The SIB-R 
Maladaptive Behaviors scale consists of 8 categories of behavior problems divided into 3 domains: 
internalizing, externalizing, and asocial behavior. Standard algorithms translate the frequency and severity 
ratings into a general summary score. Reliability and validity have been established.58 We have used this 
measure in prior research with adult siblings of individuals with ASD.43 
4. Adult with ASD: Functional Independence. Siblings will rate their brother/sister’s functional independence 
using the Waisman Activities of Daily Living Scale (W-ADL).59 The 17 items cover the domains of personal 
care, housekeeping, and mealtime activities. Each item is rated on a 3-point scale (0=does not perform the 
task at all; 1=performs the task with help; 2=performs the task independently). Items will be summed for a 
total score. Good reliability (alpha > .90) has been reported.59 
5. Broader Autism Phenotype (BAP) Characteristics in the Sibling. Sibling FORWARD program facilitators will 
rate each sibling’s social pragmatic communication skills using the Adult Pragmatic Rating Scale60 after 
Session 1. This measure has been used to evaluate the communication of parents of individuals with ASD 
and is conceptualized as a marker of the BAP. Eighteen behaviors are rated on a 3-point scale with 
specific descriptors. Items query grammatical errors and speech complexity, verbal intonation, verbal 
behavior about own emotional state, organization and clarity of verbal communication, descriptive and 
emotional gestures, appropriateness of detail and references in communication, candidness of 
communication, mispronunciation and articulation, eye contact, range of facial expression, expressed 
empathy, and habitual laughter. This information will not be collected from control siblings. 
 
Program Targets: Sibling Future Planning Knowledge & Skills (Measured at Time 1, Time 2, & Time 3) 
1. Problem Solving Skills. Siblings will complete the Social Problem-Solving Skills Inventory–Revised (SPSI-
R).61 This 52-item self-report measure was used in a problem-solving intervention with mothers of children 
with ASD.62 Five dimensions assess how the individual strategically approaches a situation (positive 
problem orientation, negative problem orientation, rational problem solving, impulsivity carelessness style, 
and avoidance style). Siblings will rate the extent to which each item is 1 (not at all true) to 5 (extremely 
true) of them. Higher scores indicate better problem-solving skills. Good reliability is reported.63  
2. Family Communication about Future Planning. Siblings will rate the frequency with which they have had 
family discussions about planning for the future of their brother/sister with ASD. Siblings will respond to a 1-
item measure previously used in a study evaluating a peer-support program for aging caregivers of adults 
with intellectual and developmental disabilities.23 The item is scored on a 3-point scale (not discussed at all, 
discussed somewhat, discussed a great deal).  
3. Future Planning Self-Efficacy. We will adapt the Caregiving Self-Efficacy Scale64 that has been used by 
with parents and adult siblings to evaluate participation in a peer-support intervention for aging 
caregivers.23 The scale consists of 6 items rated on a 4-point scale (strongly disagree to strong agree). 
Sample items include: I honestly believe I can be a good caregiver to my relative; If anyone can find the 
answer to what is troubling my relative, I can. The scale has good reported reliability (alphas .73-.82).23 
4. Sibling Barriers to Future Planning. Siblings will complete a list of barriers to future planning adapted from a 
measure used by Heller and Caldwell.23 The original list included 12 barriers such as: difficulty finding 
helpful contact persons within the service system, emotional barriers involved with thinking their parents’ 
mortality, or disagreement with a relative with a disability about the future.  
5. Knowledge of adult services and delivery systems. Siblings will rate their knowledge of the services 
received or needed by their brother/sister with ASD.65 We will use a list of 12 adult services: physical 

therapy, occupational therapy, speech and language therapy, psychological or psychiatric services, 
crisis/intervention services, personal care assistance, agency sponsored recreational or social activities, 
transportation services, income support, vocational services, respite services, and Medicaid. Siblings will 
rate whether or not their brother/sister currently receives the services, or if they do not know. If they know 
that their brother/sister is not receiving a service, they will indicate whether or not that service is needed. If 
they know that their brother/sister is receiving the service, siblings will respond to more detailed follow-up 
questions about the services received. 
6. Sibling’s Knowledge of Family Future Plan. Siblings will complete a checklist of their knowledge (yes/no/ 
don’t know) of whether their family has established: (1) a will, (2) a special needs trust, (3), a financial plan; 
(4) a letter of intent; (5) a long-term residential plan; or (6) determination of future guardianship. These 
questions will be adapted from items used in Dr. Orsmond’s collaborative study with Dr. Seltzer (R01 
AG08768, Seltzer, PI). For the proposed work, this measure has been adapted to include follow-up 
interview questions to assess siblings’ degree of knowledge about the information outlined in these 
documents or their parents’ decisions/plans. 
 
Proximal Outcomes: Sibling Behavior & Adults with ASD (Timing indicated below) 
1. Sibling Plan of Action (T2). Siblings will submit a written plan of action at the final session; control 
participants will complete this plan at Time 2. We will use a template on which siblings will detail their short- 
and long-term goals with respect to family future planning and concrete next steps. Researchers will rate 
each plan according to the following criteria: (1) inclusion of short- and long-term goals and next steps, (2) 
appropriate scope of next steps, (3) alignment with the needs and/or preferences of the adult with ASD, (4) 
accuracy (e.g., are they identifying the right resources to meet the identified goal?), and (5) sufficient detail 
(e.g., including the names and phone numbers of actual resources vs. making vague plans). At the 3-
month follow up time point, we will assess whether or not the sibling attempted or achieved their primary 
short-term goal, the steps they took to achieve their goal, and concrete outcomes of the sibling’s 
engagement in family future planning (e.g., family made an appointment with a special needs lawyer).  
2. Adult with ASD: Quality of Life (T1 & T3). Proxy report: Siblings will rate their brother/sister’s quality of life 
using the Life Experiences Checklist.66 This has been used as a proxy-report measure by family members 
and support staff to rate the QOL of adult with ASD.67,68 Five sections cover the individual’s home 
environment, leisure activities, relationships, freedom, and opportunities. Self-report: Adults with ASD will 
complete the WHOQOL-BREF, a shorter version of World Health Organization Quality of Life assessment, 
the WHOQOL-100,69 which includes 26 items rated on a 5-point scale addressing physical and 
psychological health, social relationships, and environment. This measure has been used with adults with 
ASD,68 including Dr. Orsmond’s collaborative study with Dr. Seltzer. We will modify administration as 
described by Hong and colleagues70 to ensure greater accessibility across the autism spectrum. 
3. Adult with ASD: Unmet Needs. Adults with ASD will report on their perceptions of unmet needs using items 
that Nicolaidis and colleagues71 adapted for adults with ASD using items from the 2002/ 2003 Joint US 
Canada Survey72 and 2007 National Health Interview Survey Questionnaire—Adult Access to Health Care 
and Utilization.73 They will report on unmet needs in medical care, mental healthcare or counseling, 
preventive services, emergency department visits, outpatient visits, and hospitalizations. In collaboration 
with the CAB, we will add items probing unmet needs in residential and occupational domains. 
4. Adult with ASD: Perceptions of Family Relationships: Adults with ASD will complete the 11-item Family 
subscale of the Social and Emotional Loneliness Scale for Adults74 (e.g., “No one in my family cares about 
me,” “I wish my family were more concerned about my welfare”). This scale has adequate reliability and 
validity74 and has been used in adults with ASD.75 
 
 
Data Analysis 
Aim 1: To develop the Siblings FORWARD program. Directive content analysis will be used to interpret the 
data and transcripts from the focus groups and individual interviews.76 Directive content analysis will result in 
refined objectives, content, and format of the Siblings FORWARD program that will be implemented and 
assessed in the subsequent open trial and RCT. In a series of recursive analyses, the first level of analysis will 
involve open coding, a strategy which involves investigators identifying all responses to focus group questions. 
To ensure reliability of interpretations, analyses of transcripts require multiple readings and coding by multiple 
investigators. The analytic team (Drs. Orsmond and Long) will each independently openly code one focus 
group transcript. We will then jointly compare and contrast the individual coding to identify recurring patterns in 
the responses to each question to develop initial operational definitions that describe the conceptual categories 
for each question. Specifically, we will identify conceptual categories related to family/sibling involvement in 
future planning, unmet needs of adults with ASD, and perceptions of the Siblings FORWARD program being 
developed. Coding will be done in NVivo46 to facilitate sorting and comparison of the data. 

The second level of analysis, axial coding, will focus on sorting and classifying the constructs to explicate 
the perspectives of the siblings, service providers, and adults with ASD. Using the agreed upon coding 
definitions, each investigator will independently code the remaining transcripts from the focus groups and 
interviews. The team will discuss relevant codes and establish axial coding categories in which subcategories 
from the open coding are then regrouped into more conceptual categories that refer to types of existing and 
future supports and services and barriers to implementation to promote increased sibling engagement and 
positive outcomes for the adult with ASD. Once a new set of subcategories has been identified, the research 
team will independently examine all transcripts to further develop the objectives, content, and format of the 
Siblings FORWARD program. We will conduct ongoing validity checks regarding analytic categories, revising 
the coding scheme as needed. NVivo will be used to organize the data according to the axial coding scheme. 
We will compare and contrast the data across all focus groups and in-depth interviews. 
We will ensure that our analyses are credible using several procedures. For both open and axial coding, 
each coder will compare their findings to assess coder interpretations. Through discussion and comparison of 
the coder’s reasoning, coder discrepancies will be resolved and coding definitions and constructs will be 
modified. To address the theoretical validity of our interpretations, we will discuss initial open codes and survey 
questions with the CAB.  
Aim 2: To assess feasibility and acceptability of the Siblings FORWARD program. Qualitative feasibility and 
acceptability data will be collected during the open trial and RCT portions of the proposed project. 
Acceptability (open trial and RCT): Qualitative data about perceptions of program usefulness and value 
collected during exit interviews with providers and participants will be evaluated using the qualitative methods 
outlined for Aim 1. Participant understanding of measures and procedures (open trial): Missing data and 
inconsistent response patterns on measures completed by siblings will be recorded. Data collection time will be 
calculated descriptively (mean, standard deviation, and range); participant burden associated with completing 
study measures will be captured qualitatively and summarized using content analysis. Enrollment and retention 
(RCT): Enrollment will be evaluated by calculating the number of eligible participants who chose to enroll in the 
trial. Descriptive statistics show the average number of sessions completed by participants and retention and 
follow-up rates. To assess selective attrition, we will evaluate the demographic and clinical characteristics of 
participants who completed the program versus those who did not using t-tests and chi squares. Adherence 
(RCT): Providers’ fidelity to the manual will be assessed by evaluating video recordings of sessions against 
checklists of required components and calculating the percentage of required components that were present in 
each session; 20% of sessions will be coded for fidelity. Appropriateness of outcome measures (RCT): 
Psychometric properties of measures (alpha coefficients, means, SDs) and descriptive statistics of change 
scores from pre- to post-program time points (including confidence intervals) will be calculated. 
Aim 3: To assess the outcomes of participation in the Siblings FORWARD program. We will examine 
whether the program shows promise of being successful with the intended population by conducting two-way 
repeated measures ANOVAs examining main effects of intervention condition (Siblings FORWARD vs. control) 
and repeated for assessment (pre- post- and 3-month follow up) on measures for program targets (sibling 
problem solving skills, family communication, future planning self-efficacy, barriers to future planning, and 
knowledge of services and family future plans) and proximal outcomes (sibling plan of action and adult with 
ASD quality of life, perceptions of unmet needs, and family relationships). Post-hoc tests will be used in 
multiple comparisons between groups and within each group. Effect sizes (Cohen’s d) will be calculated using 
the mean difference of the changes recorded from pre- to post-program. We will also analyze percent change 
and reliable change.77 If data are missing, analyses will be performed using the ‘last observation carried 
forward’ method for intention-to-treat analysis. We will examine descriptive statistics (mean, SD, confidence 
intervals) at the participant level for patterns and direction of change on outcome measures. We will conduct 
intent-to-treat analyses if there is program attrition. Finally, we will examine benefit of the program to control 
participants who elect to participate in the Siblings FORWARD program using one-way ANOVAs (pre to post-
program) on treatment targets and proximal outcomes.  
We will conduct a preliminary investigation of potential moderators of program effectiveness, including 
characteristics of the sibling (BAP), family (income, race/ethnicity, English as the primary language, number of 
family members with ASD), and adult with ASD (severity of ASD symptoms, problem behaviors, functional 
independence). We will calculate correlations between these variables and change scores in primary outcome 
variables, and independent samples t-tests between these variables and program completion status. 
 
 
Design Considerations & Future Directions 
Our decision to focus on siblings (and exclude families without siblings) responds to the literature 
identifying siblings’ preference to assume a greater role in their brother’s/sister’s planning and indicating that 
“family-centered” programs are perceived as focusing exclusively on parents.26,27 This allows us to tailor the 
program to siblings’ unique role and ascertain program feasibility within this specific population. In the future, 

we may expand the program to include families without eligible siblings; these families may enroll cousins, 
nieces/ nephews, close friends, etc. Our decision to enroll a heterogeneous sample across ASD severity, age, 
service needs, and extent of existing family planning follows from our strong desire to design a program that 
can be incorporated into community settings (which serve heterogeneous populations) in the future. We have 
attempted to make the materials and session goals flexible enough to be applied across varying ASD 
presentations and family situations. If successful, we expect that this model can be applied to other disability 
populations in addition to ASD. Similarly, our decision for community providers to deliver the program 
corresponds to our goal of incorporating community input from the outset and designing a program that can be 
feasibly implemented on a larger scale. We expect some provider turnover and are prepared to provide in-
depth training to subsequent staff and to guide participants through therapeutic aspects of staff transition. 
Based on conversations with state- and national-level Arc executives (see Support Letters), we plan to roll out  
future iterations of the program on a much larger scale. The decision to exclusively utilize telehealth 
technology is due to the small nature of the study and our desire to make this novel delivery method universally 
applied. In future iterations of the program, we will likely give siblings the option of participating in person. 
Similarly, the focus on English-speaking families is also due to the small scope of the proposed project and 
limited resources. We plan to develop program materials in Spanish as a proximal follow-up to this proposed 
work, and we will incorporate Spanish language providers and/or interpreters into future trials. We have 
attempted to reduce disparities by taking a community-based approach and selecting Arc chapters with high 
diversity in terms of race, ethnicity, and income. The inclusion of the adult with ASD corresponds to attempts to 
develop truly person-centered future plans. We expect that the degree and nature of involvement of the adult 
with ASD will vary widely, and we will collect detailed feedback about how to increase their involvement as 
much as possible. Finally, the utilization of an information-only control condition corresponds to the current 
standard of care in which siblings are seldom involved in future planning at all. Additional future directions in 
subsequent, larger-scale trials include longer-term follow-up of participants to assess program efficacy and 
increased examination of mediators and moderators.  
Table 4: Timeline & Milestones 
Y1 
Jan-
Mar 
- Convene CAB to review qualitative goals  
- Hire & train staff 
- Finalize recruitment procedures 
Apr-
June 
- Recruit & conduct focus groups/interviews with service providers (N=12-16), siblings (N=18-24), & adults with ASD 
(N=8) 
- Analyze qualitative findings 
- Finalize program manual by incorporating qualitative findings & CAB input  
- Set up WebEx technology 
 
July-
Dec 
- Provide in-depth training on program delivery to providers 
- Conduct open trial (N=5) 
- Provide ongoing, intensive consultation to community providers 
- Collect, analyze, & iteratively implement feasibility & acceptability data from open trial participants & providers 
Y2 
Jan-
Dec 
- Implement the RCT by enrolling ~2 families per month (24 siblings) 
- Prepare conference papers & manuscripts from qualitative data 
Y3 
Jan-
June 
- Continue RCT by enrolling ~2 families per month (12 additional siblings) 
July-
Sept 
- Finish collecting 3-month follow-up data 
- Offer Siblings FORWARD program to control siblings 
Oct-
Dec 
- Collect post-program data for control sibs who later enrolled in Siblings FORWARD  
- Conduct quantitative & qualitative analyses from RCT 
- Revise and finalize program manual 
- Prepare conference papers & manuscripts 
- Prepare grant application for a larger-scale trial of the program