Adapted Abstract
Background and Aims: These articles describe the Fearless, tearless transition model for autistic adolescents with dual disabilities.
Methods and Results: In the first study, 18 caregivers and 1 young autistic adult completed a survey, and 62 healthcare stakeholders were interviewed to understand the barriers to healthcare transition. The Fearless, Tearless Transition model was created to address the barriers identified. The model includes a transition manager, clinical assessments of needs, shared care between pediatrician and adult providers and adult providers education to develop expertise. In the second study, 22 caregivers of autistic adolescents with dual disabilities completed a survey before and at least 6 months after receiving the transition support. Preparedness for transition was significantly improved and 67% found the program useful. There was no change in confidence to transition or in caregiver’s stress. The areas of need most improved after the transition were self-care and home and family life while no change was reported in sexual health concerns.
Conclusions and Implications: A transition model that includes a transition manager and communication between pediatric and adult providers has the potential to support the healthcare transition of autistic youth.
Findings
- Preparedness for transition was significantly improved.
- There was no change in confidence to transition or in caregiver’s stress.
- Satisfaction with the program: 67% reported the transition service was useful.
- Self-care, home and family life, lifestyle and funding were the most improved areas of concern.
- Sexual health, friends and activities, and mental health show little to no improvement.
Summary
This summary includes 2 studies on the development and on the evaluation of the Fearless, Tearless Transition model. The Barriers to the healthcare transition identified in the first study included anxiety of caregivers due to difference between pediatric and adult care, variability in transition planning, lack of communication in the healthcare system, and lack of capacity and expertise in adult providers to care for autistic young adults with dual disability. Dual disabilities are defined by having an intellectual disability and/or autism spectrum disorder (ASD) and co-existing mental health disorders like anxiety disorder or depression.
The Fearless, Tearless Transition model aims to improve caregivers’ satisfaction, reduce anxiety regarding transition, and improve communication between providers during the transition period. The model includes a transition manager, an assessment of needs completed by the pediatrician, shared care and communication between pediatrician and adult providers and education to develop adult providers’ expertise.
The model includes pediatricians who start talking about transition of care at the age of 12. Between the ages of 15 and 18, Autistic youth attend a transition visit. Their needs are assessed by the pediatrician together with the transition manager. The assessment tools include (1) Modified Health of the Nations Outcomes Scale—Learning Disability (M-HoNOS-LD), (2) Modified Supervision Rating Scale (M-SRS), (3) 12-year-old checklist and (4) Autism Parenting Stress Index (APSI). A transition plan is created based on the assessment results. The Autistic youth alternates visits between the pediatrician and the general adult provider until transition is completed.
The second study is based on surveys of 22 caregivers completed before and at least 6 months after receiving the transition support. This model was rated as somewhat useful or useful by 67% of caregivers. They felt significantly more prepared for transition after the intervention. There was no significant change in confidence to transition or in caregivers’ stress. Areas of concerns improved compared to the initial survey were self-care, home and family life, lifestyle, and funding. There was little to no change in sexual health. Areas of concerns including friends and activities and emotional health showed less than 10% improvement.
Real-World Implications
A transition model that includes a transition manager, needs assessment, communication between pediatric and adult providers and provider education has the potential to support the healthcare transition of autistic youth. Additional support addressing specific areas of sexual health, friends and activities and emotional and mental health is needed.
Limitations
- The studies include a small number of participants.
- Non-English-speaking patients were excluded from the study and may experience greater barriers to transition.
- There is no measure of the Autistic young adult’s or provider’s perspective of the impact of the transition model.
