Why:

We need population-level data collection and reporting to track the performance of service systems and identify areas of improvement to better meet the needs of autistic transition-age youth and young adults and their care partners.

Example:

For instance, by looking at large data sets on employment supports for autistic young adults, we can find the gaps in services and develop focused strategies to make these resources better.

Considerations:

Research priorities should include understanding of the differences in transition outcomes related to:

• Intersectionality: identity (race/ethnicity, gender, sexual orientation, socio-economic position), geographic location, and disability characteristics (including levels of support need and co-occurring diagnoses)
• Diagnostic Processes: Experiences of people who were late diagnosed, undiagnosed, self-diagnosed, or mis-diagnosed, and the impact of this experience on healthy transitions

Example research question:

1. What are the impacts of limited, delayed, inadequate, or culturally incompetent support services on autistic individuals, their families and their communities?
   • Service Needs: Understanding service needs to support achievement of healthy life outcomes, as determined by youth (and/or their care partners).

Example research questions:

1. How can we better integrate early and ongoing transition planning into schools and healthcare systems?
2. How can we provide better support for co-occurring behavioral and emotional concerns among autistic transition-age youth?
3. How can we anticipate changes in daily routines and living arrangements and map transition preparation onto what we think might happen for a youth?
4. What are the impacts of sensory issues across all areas of life (housing, transportation, employment, socialization), and what accommodations would be useful?
5. What are the implications of masking on functioning and access to care?
6. What improvements need to be made to transportation options, including models for teaching driving and navigation within the community?
7. How can we support healthy roles of families in transition and functioning in supporting young adults? For example:
   • What do family care partners experience, and what are their support needs, given the limited supply of direct support workers and limited family support options?
   • What are the financial situations of family care partners who provide support for autistic transition-age youth and young adults?
   • What is the impact of guardianship (and its alternatives) on supportive decision making during the transition years?

• Healthy Life Goals: Understanding what a healthy adult life looks like for different autistic people, and models of how to support transitioning toward healthy adult lifestyles

Why:

We need research that examines the feasibility, effectiveness, dissemination, and implementation of promising programs and strategies for service delivery for marginalized groups of autistic transition-age youth.

Example:

By looking at culturally responsive mentorship initiatives, for instance, that pair autistic transition-age youth from marginalized backgrounds with mentors who share similar cultural experiences, we can explore their potential to provide personalized support, guidance on navigating adulthood, and skill development opportunities tailored to the participants' cultural contexts.

Considerations:

Research priorities should address our understanding of:

• Service delivery methods and programs that can meet the individualized and changing needs of marginalized autistic youth
  • We must intentionally consider the needs of historically under-researched populations including non-speaking autistic persons, gender and sexual minorities, people of color, immigrants and/or households where English is a second language, and representatives of people with high levels of complex needs.
• Intensive study of interventions for dyspraxia to better meet the needs of non-speaking persons
• Use of non-familial relationships for support (e.g., peer mentorship models) during the transition to adulthood
• Trauma and violence-informed service delivery methods to better meet the needs of multiply marginalized autistic transition-age youth

Why:

We need research regarding the performance and coordination of complex service ecosystems to inform the system transformations necessary to address the needs of autistic transition-age youth and young adults, and their care partners.

Example:

For instance, a study could examine the effectiveness of current services that support autistic youth transitioning to adulthood, such as mental health services, educational support, and job training programs. By analyzing how these services coordinate with one another, researchers can identify gaps in support and recommend improvements that ensure autistic individuals and their care partners receive comprehensive, seamless assistance during this critical period of their lives.

Considerations:

Research priorities should include understanding of:

• Implications of service disconnections and development of service system interventions (through improvements to systems and policies) to promote continuity of care, and to avoid the effects of disconnections from services and disengagement from employment and other daily activities during the transition years
• Collaboration and integration across systems to facilitate continuity of services and supports between high school and adulthood, and between child and adult serving systems of care
• Policy reforms needed to dismantle the “poverty traps” of public benefits and their unintended consequences
• Improvements to support successful employment and career development