Long, K. A., LaRochelle, J., Gordillo, M., Pariseau, E. M., DeCelle, M. G., & Orsmond, G. (2023). Siblings FORWARD: Development of a new program to engage siblings of autistic adults in future planning. Journal of Autism and Developmental Disorders. doi.org/10.1007/s10803-023-06178-1

Reviewed by Charlie Hui, Extern, and Kate McKenna, MEd, MSEd, MS, BCBA
Association for Science in Autism Treatment

Why research this topic?

Research Synopses - Psuchological, Educational and Therapeutic InterventionsParents of autistic children often express fear and concern about their ability to provide continued care for their child as they enter and progress through adulthood. Challenges arise related to planning for and establishing reliable future supports, ranging from financial, social, and legal assistance. Commonly faced roadblocks to accessing these supports can include high costs and long wait lists for families as they navigate a complicated adult service system with limited information.

Meanwhile, many siblings express a heartfelt desire to be involved in the lives of their autistic siblings but sometimes feel overlooked by their parents, until they find themselves overwhelmed when stepping into a greater caregiving role as their aging parents become less able to provide daily support. Unlike parents who spend years planning for the future and learning about autism resources, studies have found that most siblings are ill-equipped and left overwhelmed, with few family-focused future planning programs available, and virtually none that specifically center the needs and challenges of siblings of autistic adults regarding future planning.

This study aimed to address the gap in siblings’ future planning skills by having autistic individuals, parents, and siblings work together to gain a deeper understanding of available resources and skills to help care for autistic family members. Spec the study reported feedback from families and presented the information with a revamped sibling-included forward-planning framework as a result.

What did the researchers do?

The study included six autistic adults, their adult siblings, and service providers to participate in focus groups or individual interviews conducted by doctoral-level psychologists over the span of 6-7 sessions, each lasting one hour. Topics included improving how to help families improve communication across difficult topics, increase confidence in accessing autism-related adult services, and problem solve potential future problems and solutions. Participants shared their viewpoints on how to make the Siblings FORWARD program more effective at helping siblings collaborate with their families on future planning.

The objective of the FORWARD Program enabled the siblings of autistic individuals to create a plan where they outlined goals related to their sibling’s social function, occupation, education, health, finance, housing, and more. This program was designed to be delivered within community settings via telehealth to address distance and resource barriers. Individual interviews and focus groups were conducted in sessions ranging from thirty to ninety minutes to discuss their thoughts on future planning and the Siblings FORWARD program.

Each interview started with asking family members and siblings broad questions about their needs and current involvement in future planning (e.g., “In general, what role do you—the sibling—play in supporting your family member on the autism spectrum?”). Next, questions were asked regarding what the siblings and family hoped to see from future planning (e.g., “What types of programs or support services would be beneficial for future planning for adults on the autism spectrum?”). Finally, the Siblings FORWARD program was explained to the siblings and family members, who were then asked for feedback on how to improve the program. Throughout the study, the Siblings FORWARD program was continuously updated as earlier responses were added before it was presented to later participants.

What did the researchers find?

The researchers found that there was strong enthusiasm for the proposed Siblings FORWARD program, with siblings and autistic siblings saying they would be excited to participate. The researchers also found various recurring themes throughout their interviews.

    1. Need for a Sibling-Focused Future Planning Program – Data showed that both parents and siblings expressed a strong need for a sibling planning program, stating that current providers have uncoordinated and haphazard approaches to guidance and services to autistic adults and their families. Specifically, of the few programs and guidance available, nearly all are directed to parents, leaving siblings out of the equation. Finally, families expressed difficulty finding information because of the difficulty in identifying relevant information for their specific situation, given how wide a range the autism spectrum is.
    2. A Myriad of Goals Desired – Families expressed the need to increase the level of involvement siblings have in the future planning process, as well as flexibility to account for differences in each family’s circumstances.
      1. Combined Approach: Skills & Knowledge – Families wanted not just information about autism services, but to be educated on how to develop skills, like goal setting, that they could continue to use and develop after the program ended. Such skills also included navigating information when it seemed overwhelming and poorly coordinated, and joint communication skills between the sibling and the autistic adult.
      2. Communication, Goal Setting, & Problem-Solving Skills – Families also wanted to be able to develop greater open communication skills, not limited to verbal conversation, that would help autistic adults understand their sibling is committed to supporting them and how to navigate through difficult topics about the future that often make families emotional. Finally, they wanted to develop problem-solving skills that would help them set goals and achieve them in incremental steps in their future planning process.
      3. Systems Navigating Education – Siblings wanted to be educated on a breadth of information including medical and mental health (e.g., Medicaid), legal and financial domains (e.g., guardianship, trusts), education and occupation (e.g., employment training and coaching, job placement assistance), and community living (e.g., housing, recreation, transportation).
      4. Family Relationships – Throughout the entire process, families wanted to foster sibling-sibling relationships and parent-sibling relationships, are especially important in many cultures. Instead of having this be its own lesson, families wanted it incorporated and interwoven throughout the program.
    3. Variety of Options for Program Participants – While siblings wanted to be the primary participants in Siblings FORWARD, there was strong agreement in giving siblings a variety of options, such as one or two program sessions that would best fit the sibling’s commitment as well as individual sessions for just the sibling themselves. These types of individual sessions also help siblings express their fears and predictions of the future without making the autistic adult feel like a burden to their siblings.

Siblings agreed that a telehealth model with individual sessions with families would be best, as it would have widespread reach and be tailored to each family’s unique circumstances. However, they also cited concerns about technology being inaccessible for older generations and communication deficits, especially when it comes to more emotionally sensitive topics. Siblings also agreed that introducing the Siblings FORWARD program in a community setting would be beneficial for increased reach, but cautioned that it should be portrayed as a minimal burden to learn and deliver as not to overwhelm overworked providers.

What are the strengths of the study?

The strengths of the study were that it was constantly evolving, implementing advice about the study in real time, and being able to confirm if the new material they added had positive receptions or if the old material they cut was missed by any of the new interviewees. This added to the social validity of the FORWARD program. Additionally, this study focused on not just parents, but siblings, and the autistic individual themselves for advice, allowing it to be one of the more holistic approaches to future planning.

What are the limitations of the study?

The study’s constantly evolving nature can be a double-edged sword, making it hard to set constants. As the interviewers continually adjust FORWARD planning based on feedback from interviewees, later respondents may not get to review previously deleted material that they may have supported. The study was also hosted right before the COVID-19 pandemic, so the concern about teaching families to use ZOOM software might now be overstated as there is increasing knowledge about virtual meeting platforms, making telehealth have an even higher viability. Finally, the study lacked pre-post measures that would more objectively assess benefit as well as no long-term maintenance such as following up with interviewed families.

What do the results mean?

The results demonstrate that involving siblings and parents in FORWARD planning programs through telehealth has potential. This confirms research done in 2013 by Tozer, which found that understanding how relationships between siblings have developed over time can help adult siblings’ better contribute to the lives of their brother or sister with autism. This paper fills an existing gap in the literature where previous research focused on autistic individuals’ transition to adulthood, but not their needs and experiences during adulthood. The positive results from this study also showcase that it is possible to develop a program providing planning advice for families that has a high degree of social validity. Finally, the researcher’s conclusion is that FORWARD planning would be covered by existing funding structure, signaling that FORWARD planning can soon be accessible to families across different socioeconomic backgrounds.

References

Tozer, R., Atkin, K., & Wenham, A. (2013). Continuity, commitment and context: Adult siblings of people with autism plus learning disability. Health & Social Care in the Community, 21(5), 480-488. https://doi.org/10.1111/hsc.12034

Citation for this article:

Hui, C., & McKenna, K. (2025). Research Synopsis: Siblings FORWARD: Development of a new program to engage siblings of autistic adults in future planning. Science in Autism Treatment, 22(7).

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