One of the biggest needs within the autism spectrum disorder (ASD) community is that of facilitating the transition of patients from services and responsibilities meant for a young individual to those of an adult. Transitioning include planning ahead for changes in educational settings (going from high school to college), venturing for the first time into a work setting, living alone, learning to drive, etc. Physicians also do transition planning when their patients have to change doctors going from a pediatrician to a primary care practitioner. Why is this done? Pediatricians specialize in the diagnosis and treatment of childhood disorders. The health care of adults, usually defined as those over 18 years of age, is done by other specialty-trained physicians.
Transitioning in health care is usually a simple procedure. However, young individuals with chronic conditions (e.g., diabetes, cystic fibrosis, ASD) present challenging problems. According to a recent article by Lyons et al (2013), “In our opinion, the main barriers to a seamless transition from pediatric to adult care are 1) not having a plan for the transition process, 2) starting the transition process too late, 3) not empowering the adolescent to have an active role in the transition process, and 4) fundamental differences between pediatric and adult clinics.” Individuals with ASD are especially prone to difficulties as they don’t like change and they are half as likely to receive health care transitioning support as others with chronic medical needs (Cheak-Zamora et al., 2013). According to the abstract of a recent study (Cheak-Zamora et al., 2013):
Results: Whereas half of youth with other special health care needs (OSHCN) received health care transition (HCT) services, less than a quarter of youth with ASD did. Only 14% of youth with ASD had a discussion with their pediatrician about transitioning to an adult provider, less than a quarter had a discussion about health insurance retention, and just under half discussed adult health care needs or were encouraged to take on appropriate responsibility. Logistic regression analyses indicated that having a developmental disability or multiple health conditions in addition to ASD and quality of health care were strong predictors of HCT, whereas demographic and family variables accounted for little variance.
Conclusions: Youth with ASD experience disparities in access to HCT services. Youth with comorbid conditions are at greatest risk for poor access to HCT services and increased quality of care has a positive effect. Research is needed to understand barriers to care and develop policy and practice guidelines tailored for youth with ASD.
Health care is more efficient with proper transitioning, especially when you have a chronic condition. Transitioning reduces health care utilization as it helps propel the role of the patient as an overseer in his/her own care. It also facilitates goal setting, problem solving and coordinating their own care, all of this leading to lower absenteeism from medical appointments. Patients who don’t transition end up going to emergency care for small things. This is costly and ineffective.
Transitioning is a developmentally appropriate process that for many individuals goes along with transitioning to adulthood. Individuals with chronic medical conditions tend to be resilient from carrying a burden for a long time; still, they need help in this process. Physicians and parents need to coordinate transitioning of health care and this should be started early, maybe at around 12 years of age.
Successful transition programs for ASD are usually carried out tertiary medical facilities as well as specialized autism centers. In these centers health care is coordinated in regular meetings involving the different care providers (e.g., pediatrics, medicine, social worker, nurse practitioner). This committee will define what are the individual goals for improvement, key challenges to overcome and an evaluation plan. In some centers a community representative keeps the consumer voice at the table. A health care coordinator is appointed to facilitate the transfer of information to the patient. The health care coordinator provides a welcome letter, including the philosophy for treatment of that particular center, and a list of frequently asked questions (FAQ), e.g., phone number for each doctor, where to hospitalize.
AutismSpeaks has a useful tool kit to help transitioning ASD individuals. The same is located at: https://www.autismspeaks.org/family-services/tool-kits/transition-tool-kit
Cheak-Zamora NC, Yang X, Farmer JE, Clark M.Disparities in transition planning for youth with autism spetrum disorder. Pediatrics (3):447-54, 2013.
Lyons SK, Libman IM, Sperling MA. Diabetes in the adolescent: transitional issues. J Clin Endocrinol Metab. 2013;98(12):4639-4645.