The rise in the diagnoses of autism spectrum disorder in youth will mean a rise in the number of adolescents transitioning to adult medical care. 50,000 youth with autism are estimated to enter adulthood each year (Rast et al., 2020) with varying degrees of communication skills, adaptive functioning skills, and social skills. Many autistic patients also carry other mental health and physical diagnoses. Developing a comprehensive healthcare transition program is essential to any healthcare provider taking care of this population.
Despite the need for transition programs for autistic adolescents, a recent analysis (Zablotsky et al., 2020) of The National Survey of Children’s Health (NSCH) has found that only 1 in 4 youth with ASD had actively worked with their doctor to understand future changes in their healthcare. This is significantly less than youth with other mental, behavioral, or developmental disorders. Currently, adults with autism report multiple barriers to receiving adequate healthcare, making the need for transition programs critically important. Doherty et al. (2021) reported that the greatest barriers to receiving healthcare for autistic adults were uncertainty about whether symptoms warranted a medical visit, difficulty making appointments by telephone, not feeling understood, difficulty communicating with their doctor, and waiting room environments. Unfortunately, providers also report many barriers when designing and implementing adequate autism transition programs. Harris et al. (2020) reported provider barriers as inadequate time, provider preferences, and difficulty in collaboration with adult providers. For this reason, a clear framework for an autism transition program that considers medical, personal/social, and educational/vocational needs is needed.
When considering the medical needs of an autistic young adult, transition programs need to consider the increased rates of ADHD, depression, anxiety, seizures, and obesity in this population. Providers who are comfortable managing these issues will be essential in the transition team. Other specialists, as well as allied healthcare professionals, will also be needed in the transition team because many of these issues are not all managed by the primary care provider. Preventative care services such as counseling, nutrition, and fitness services will also have to be included.
Individual patient needs will also need to be addressed. The transition program should focus on building health literacy skills, including effective communication, with their medical team. Individual patients will also need to gain knowledge of their medical conditions and medications. The program should also address reproductive health and risk-taking behaviors of all patients regardless of intellectual ability. The program should also help patients with various communication abilities practice strategies for making and attending appointments. Text-friendly services, as well as provider comfort using communication devices, will be of utmost importance. Autism-friendly pharmacies that allow for texting or picture-based medication re-ordering services will need to be part of the transition plan as well.
When considering the social and personal needs of the patient, transition programs should support patients in improving their skills in ADLs and building safe social connections. Services to help families and patients with housing, financial support, and guardianship should also be provided in an effective transition program. For patients who are more independent, the transition program should also focus on community and social connections, including dating and internet safety.
When considering education and vocational needs, the medical transition team must be aware of the academic and vocational services available to their patients post-high school. Many patients and families rely on school staff to develop and coordinate these plans, but they do not recognize how these supports will end after high school. Effective transition plans will help patients identify vocational and educational support post-high school as well.
Of utmost importance, transition programs also have to adjust goals for each patient individually. Some patients may be able to become totally independent with their healthcare needs, while others may need significant assistance navigating the healthcare system. Effective programs should develop plans so that all patients can develop achievable goals. Creating “Transition IEPs” is a creative way to make sure all patients are included in developing this important skill.
Transition Programs should also make sure that all services, including the medical team that the patient is transitioning to, are provided in an autism-friendly environment. Appointments for autistic patients can be conducted at a time that is less busy so that the waiting room is not loud. Additionally, giving the provider more time for appointments also allows for alternative communication techniques to be used more effectively, as well as more time to review the many medical, social, and community issues that need to be addressed. Sensory Friendly environments, so that patients are comfortable and/or given tools to help them feel more comfortable, are also important.
Autistic individuals deserve excellent health care. They should feel safe when interacting with the health care system. This should start early when given care as a child, and the healthcare community needs to make sure that the transition to adult care is carefully organized so that autistic individuals continue receiving good healthcare throughout their adult years.
Carrin E. Schottler-Thal, MD, is Associate Professor of Pediatrics at Autism Medical Home and Medical Director at Albany Medical Center. For more information, email her at schottc@amc.edu.
Sources
Rast, Jessica, et. Al. Use of Vocational Rehabilitation Supports for Postsecondary Education Among Transition-Age Youth on the Autism Spectrum. Journal of Autism Developmental Disorders.2020 June; 50(6) 2164-2173.
Zablotsky, Benjamin, et al., (2020). Health Care Transition Planning Among Youth with ASD and Other Mental, Behavioral and Developmental Disorders. Journal of Maternal and Child Health, 24 (6), 796-804.
Doherty, Mary, et. Al., (2021). Barriers to Healthcare and Self-Reported Adverse Outcomes for Autistic Adults: A Cross-Sectional Study. BMJ Open. (12)http://dx.doi.org/10.1136/bmjopen-2021-056904.
Harris, Jill, et. Al, (2021) Development and Implementation of Health Care Transition Resources for Youth with Autism Spectrum Disorders within a Primary Care Medical Home. Autism, 5 (3), 753-766.
