Falling Off a Cliff: An Opportunity for Pharmacists to Excel in the Transition of Autistic Patients to Adulthood

By BarbraKaryne Nchinda Fobi

Photo: Jeswin Thomas | Pexels

Autism is a lifelong neurological condition that manifests during early childhood, irrespective of race, gender, or socioeconomic status (United Nations, n.d.). The term autism spectrum disorder (ASD) refers to a range of conditions characterized by some degree of impaired social behavior, communication or language, and a narrow range of interests and activities that are both unique to the individual and carried out repetitively (WHO, 2019).

With an estimated global prevalence of 1 in 160 children, ASD has become a common condition (WHO, 2019). In 2007, the United Nations (UN) General Assembly unanimously declared April 2nd as World Autism Awareness Day (WAAD) due to the high prevalence of autism in children in all regions of the world. WAAD highlights the need to improve the quality of life for those with autism so that these individuals can lead full and meaningful lives as integral parts of society (United Nations, n.d.).

Since becoming an adult is typically equated with becoming a full and equal participant in the economic, political and social life of one’s community, the 2020 UN observance of WAAD draws attention to issues related to the transition to adulthood, such as access to post-secondary education, participation in youth culture, employment and independent living (United Nations, n.d.).

Often, parents dread the transition of their autistic children from high school into adulthood (Roux et al., 2015). This period, sometimes referred to as “falling off a cliff,” comes with the unfortunate truth that some educational and social support services will cease for autistic individuals once they become legal adults (United Nations, n.d.). Support and transitional services are essential for guiding youths toward their goals, yet many families struggle to navigate these services. Consequently, many youths fail to launch successfully into adulthood (Roux et al., 2015).

Entrance into adulthood is a vulnerable period, particularly for young adults on the autism spectrum. As trusted and easily accessible healthcare practitioners, young pharmacists can positively impact this transition via the following:

• Awareness and Knowledge: In order to provide optimal patient care, especially during the transition to adulthood, pharmacists need to be aware and trained in serving autistic patients. A study assessing pharmacists’ awareness and knowledge of autism indicated a small number of pharmacists knew autism is a developmental disorder (Khanna & Jariwala, 2012). Approximately one-third (32%) of pharmacists did not believe genetics play a major role in autism etiology, and roughly one-fifth (18%) believed that vaccines can cause autism (Khanna & Jariwala, 2012). Pharmacists can increase their knowledge of autism by specializing in psychiatry. Wongpakaran et al. demonstrated that psychiatry specialized pharmacists’ intervention is an effective strategy to resolve drug-related problems among children with ASD. Pharmacists can also complete continuous education (CE) programs related to neurology and psychiatry.
• Medication adherence: Many youths with autism have more than one co-occurring health conditions including attention deficit disorder (ADD), attention deficit hyperactivity disorder (ADHD), anxiety, depression, and seizure (Roux et al., 2015). Considering the common use of psychotropic drugs among youths, young pharmacists can identify and address barriers to medication adherence. For example, they can identify dosage forms that facilitate ease of medication administration, implement technology-based interventions, set realistic expectations at initiation of treatment regarding the time to full effect of drug therapy, and address potential adverse drug effects.
• Collaboration: Pharmacists should not only discuss medications with patients, but also assist patients with their transition from pediatric to adult doctors within health systems. Pharmacists should collaborate with other healthcare providers to address patients’ medical needs and insurance coverage during this transitional period. In the United States, a survey of pathways to diagnosis and services revealed that 21% of autistic youths aged 15–17 indicated that someone discussed health insurance coverage as they became adults (Roux et al., 2015). In order to better understand a patient’s needs, pharmacists must build trustworthy relationships with their parents and caregivers. Working as a member of the patient’s health care team, pharmacists should assess response to therapy, identify medication errors, develop medication protocols and communicate with other medical providers (Pisacane & Salvo, 2013).
• Counseling: Autism not only affects patients, but also their families. Pharmacists are well-positioned to work with patients and caregivers in the development of goals to better manage their patient’s condition. They must ensure patients and/or caregivers understand each medication, its use, potential side effects, interactions, and monitoring parameters (Pisacane & Salvo, 2013).

Since young pharmacists are in an age group closer to that of autistic patients during their transition to adulthood, they can easily develop relationships with these patients. Overall, young pharmacists should leverage this position and serve as a drug information resource, researching and evaluating available evidence to assist in informed decision making.

On April 2, as pharmacists around the world celebrate the WAAD, young pharmacists should help draw attention to the need for innovative programs designed to support youths with autism as they transition into adulthood. As young pharmacists participate in events, fundraisers and donation campaigns, we must also keep in mind that increasing our awareness and knowledge about autism will better position us to work with these patients, their families, and other healthcare providers in promoting optimal patient care, especially in the transition to adulthood.

References

Khanna R., & Jariwala K. (2012). Awareness and knowledge of autism among pharmacists. Research in social and administrative pharmacy, 8(5), 464–471. doi.org/10.1016/j.sapharm.2011.11.002

Pisacane R., & Salvo M. (2013). Pharmacist Update on Autism and its management. U.S. Pharmacist, 38(1), 19–22. Retrieved from https://www.medscape.com/viewarticle/779380_4

Roux, A.M., Shattuck, P.T., Rast, J.E., Rava, J.A., & Anderson, K.A. (2015). National Autism Indicators Report: Transition into Young Adulthood. Philadelphia, PA: Life Course Outcomes Research Program, A.J. Drexel Autism Institute, Drexel University. Retrieved from https://drexel.edu/autismoutcomes/publications-and-reports/publications/National-Autism-Indicators-Report-Transition-to-Adulthood/

United Nations. (n.d.). World Autism Awareness Day: 2 April. Retrieved March 25, 2020, from https://www.un.org/en/events/autismday/background.shtml

WHO. (2019, November 7). Autism spectrum disorders. Retrieved from https://www.who.int/news-room/fact-sheets/detail/autism-spectrum-disorders

Wongpakaran R, et al. (2017). Impact of providing specialty pharmacist intervention on reducing drug-related problems among children with autism spectrum disorder related to disruptive behavioural symptoms: A prospective randomized open-label study. J Clin Pharm Ther, 42, 329–335. doi.org/10.1111/jcpt.12518