The Little Stars Autism Support Survey
Executive Summary
Village of the Stars conducted the Little Stars Autism Support Survey to better understand the experiences, challenges, and service needs of adoptive families raising children with autism spectrum disorder (ASD). The survey received 19 family returns and provides valuable direction for future programs, partnerships, and resource development.
Because not every family answered every question, the number of responses varies across the survey. In addition, some participating families reported information for more than one child with autism. Consequently, child-level totals may exceed the number of participating families; for example, the demographic section represents 22 children. Percentages in this report are therefore calculated using the number of responses to each question rather than the total of 19 survey returns. Questions allowing multiple selections and coded written responses may also produce totals exceeding 100%.
The findings reveal that participating families are caring for children and young adults with substantial and often overlapping support needs. Of the 19 child-level responses concerning daily living, 16 indicated that the child required at least some assistance, including nine who needed a great deal of help or full assistance. This demonstrates that ongoing caregiving support is the norm for many participating families rather than an occasional need.
Behavioral regulation was the most frequently reported challenge within the home, identified by 14 of the 18 families answering that question. Families also described difficulties involving routines and executive functioning, safety and self-injury, emotional regulation, anxiety, and communication. These challenges can affect the entire household and may place significant demands on parents, caregivers, and siblings.
Social connection is another major concern. Eleven of 18 families reported difficulties with social participation and connection, while nine identified challenges involving communication and relationships. Families described isolation, limited peer contact, emotional and behavioral barriers, and a shortage of suitable programs. These findings suggest a need for safe, accepting opportunities through which children and young adults can develop friendships, practice social skills, and experience a greater sense of belonging.
Concerns about the future were especially prominent. Long-term independence and future planning were identified by 15 of the 18 respondents answering the age-related concerns question. Families also expressed concerns about puberty-related changes, physical growth and strength, and the transition into adulthood. These results indicate that families need support not only for present-day challenges but also for housing, employment, daily living, guardianship, and long-term care planning.
The clearest unmet needs were respite care and financial assistance, each selected by 11 of 18 families. Behavioral or mental-health support, transition planning, and social or recreational programs were also frequently requested. Access to existing services appears uneven: some families receive Medicaid, waiver, educational, respite, or therapeutic support, while others reported being on waiting lists or receiving no current services. Families’ descriptions also indicate that insurance limitations, eligibility requirements, out-of-pocket costs, and the availability of qualified providers can prevent them from obtaining needed assistance.
Families expressed a strong desire for Village of the Stars to combine emotional and spiritual support with practical help. Emotional or spiritual support was selected by 16 of 18 respondents, while friendship and belonging and connection to helpful resources were each selected by 11. Financial assistance was selected by 10. These responses suggest that Village of the Stars can serve a distinctive role by creating a caring, faith-informed community while also helping families navigate resources and address practical needs.
Interest in the proposed Online Buddy Program was cautiously positive. Eleven of 18 families were interested or wanted additional information, while six selected “not applicable,” indicating that eligibility, age range, communication ability, safety procedures, and program expectations will need to be clearly defined. Among the 13 families describing preferred Buddy support, friendship and companionship and social or conversation skills received the strongest interest.
Based on the survey findings, five near-term priorities emerge:
Develop a small, carefully structured Online Buddy Program pilot.
Strengthen respite-care information, referrals, and partner pathways.
Help families identify financial assistance and available public benefits.
Build partnerships for behavioral, mental-health, and transition support.
Include caregivers and siblings in a whole-family approach to support.
These findings should be viewed as insights from the participating families rather than conclusions about the entire adoptive community. Nevertheless, they provide a clear starting point for board discussion, partnership development, fundraising, and small-scale program pilots. The results affirm the importance of continuing to listen to families and developing services that respond to both their immediate challenges and their long-term hopes for their children.
To view the detail findings, read this report
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