Implementation and Evolution of a Primary Care-Based Program for Adolescents and Young Adults on the Autism Spectrum

Abstract

Current primary care models are inadequate for adults on the autism spectrum. The Center for Autism Services and Transition (CAST) clinic was developed in 2014 using feedback from parents of adults on the autism spectrum and patient-centered medical home principles. We evaluated the reach of CAST's services. As of January 2021, 858 patients were seen in CAST. Many continue to receive primary care from the CAST clinic. The program has undergone staffing changes but continues to accept new patients. We have added services such as "happy visits," pre-procedure videos, and telehealth visits. CAST provides one example of how to improve primary care for adults on the autism spectrum. More research is needed to assess the effectiveness of the CAST model. Keywords Transition to adult care • Primary care • Adolescent • Young adult • AutismAround the world, approximately 1% of adults are on the autism spectrum (Baxter et al., 2015;Brugha et al., 2011;Dietz et al., 2020), and a large number of people on the autism spectrum will be reaching adulthood over the next 5 to 10 years (Van Naarden Braun et al., 2015). The transition to adulthood in general and from pediatric to adult health care specifically are challenging for many young adults (Bonnie et al., 2015). The legal changes that begin at age 18 such as only sharing medical information with the patient, which are meant to protect a patient's privacy, can also create communication barriers for young people whose parents are regularly involved in conversations about medical care, and this is especially problematic for young people on the autism spectrum (Cheak-Zamora & Teti, 2015). Additionally, young adults on the autism spectrum have to navigate disruption of support services upon exiting the school system and changes in insurance eligibility that occur between

Caregiver perspectives on barriers and facilitators to primary care for autistic adults: A qualitative study

“…Interviews with autistic adults and caregivers of autistic adults found that primary care delivered via telehealth increased patient comfort by eliminating exposure to the overstimulating clinical environment and afforded comparable or improved patient-provider communication ( 52 ). The CAST (Center for Autism Services and Transition) clinic, which was built into a larger primary care practice, uses patient-centered medical home principles and offers telehealth to improve care for autistic adults ( 53 ). Billing and reimbursement for hallmarks of the program such as extended appointments and “happy visits” have been a challenge, requiring the program to rely heavily on grant and donor funding ( 53 ).…”

“…The CAST (Center for Autism Services and Transition) clinic, which was built into a larger primary care practice, uses patient-centered medical home principles and offers telehealth to improve care for autistic adults ( 53 ). Billing and reimbursement for hallmarks of the program such as extended appointments and “happy visits” have been a challenge, requiring the program to rely heavily on grant and donor funding ( 53 ). When these alternative forms of service delivery are not available, financially feasible, or appropriate, providing PCPs with individualized accommodation reports have been reported by patients and providers to reduce barriers ( 26 ).…”

Predicting timely transfer to adult care in a cohort of autistic adolescents and young adults

“…To be included in this study, patients had to have at least one encounter at Nationwide Children’s Hospital (NCH) prior to at least one encounter at The Center for Autism Services and Transition (CAST), based at The Ohio State University Wexner Medical Center in Columbus, Ohio. CAST is a primary-care based program that was established to provide primary care to autistic adults in a way that is adapted to the unique needs of this population and with particular attention to their transition to adult care [ 9 , 14 ]. Due to the geographic proximity of NCH and CAST (less than 15 miles), many CAST patients have been referred to CAST by an NCH clinician.…”

Transtorno do espectro autista: Uma abordagem da medicina da família e comunidade

“…Além disso, os adultos que se encontram no espectro do autismo apresentam uma menor inclinação para receber os serviços de cuidados de saúde preventivos recomendados, sendo mais propensos a relatar necessidades médicas e a recorrer mais às unidades de urgência do que a população em geral. Isso sugere que os atuais modelos de atenção primária não são adequados para esse grupo populacional (Hart, 2022).…”