Healthcare Transition Challenges Faced by Young Adults With Autism Spectrum Disorder

CLINICAL PHARMACOLOGY & THERAPEUTICS

T Hall1, D Kriz1, S Duvall1, M Nguyen-Driver1 and T Duffield1

COMMENTARY

Autism spectrum disorder (ASD) is a neurodevelopmental disorder that impacts communicative interactions, with patterns of repetitive and restricted behaviors, interests, and cognitive rigidity. Recent incidence rate estimates for ASD are 1 in 68, and primarily male (4:1). A major epidemiological issue in ASD is transitioning to independence in adulthood, particularly navigating the healthcare system. This commentary will focus on approaches healthcare providers can use to not overlook and support individuals with ASD.

Adults with high functioning ASD (i.e., ASD without an associated intellectual disability) may be overlooked in a busy healthcare setting as they may not seem outwardly different from their peers. Nonetheless, ASD is a neurodevelopmental disorder that has early life manifestations that impact individuals across the lifespan. Difficulties with motor and sensory processing, use of social language, and maladaptive cognitive styles are factors that impact independent functioning in young adulthood for individuals with ASD.1,2 In accordance with what is known about typical brain development, it is understandable how sensory and motor abnormalities in ASD interfere with and disrupt learning of more basic skills, which more complex skills are predicated upon (e.g., social learning). Specific deficits in social language (e.g., difficulties understanding metaphors) can interfere with an individual’s ability to understand their healthcare provider’s instructions. Furthermore, individuals with ASD demonstrate a tendency to engage in “all or nothing” thinking patterns and have difficulties generalizing information (i.e., rigid/inflexible thinking).3 Limitations in planning and organization can also interfere with their ability to engage effectively in their healthcare regimen. Therefore, it is important for medical professionals to relay information to adults with ASD in a clear and concise manner. Ideally, healthcare follow-up should include help with proper organization of appointments and medications important to their health. Overall, these social learning and cognitive deficits often become more functionally impairing as individuals grow older and their environments become more complex, which may account for some of the difficulties faced by young adults with ASD as they transition to managing their medical care.

How one’s healthcare is managed can have a large impact on overall quality of life. In recent years, health-related  quality of life has emerged as an important health outcome measure for a variety of different chronic conditions. Research indicates that people with ASD experience a multitude of psychosocial and physical health effects that are likely to significantly impact healthrelated quality of life. In comparison to others with typical development, those with ASD face challenges with social engagement, friendships, and processing emotions in themselves and others.4,5 Additionally, people with ASD are more likely to experience mental health conditions, such as loneliness, anxiety, depression, symptoms of attention deficit/hyperactivity disorder, psychosis, and symptoms of obsessive compulsive disorder.6 Persons with ASD have also been found to experience poorer general physical health than their typically developing peers and to have a higher prevalence of gastrointestinal disorders, sleep problems, diabetes, obesity, seizures, autonomic nervous system differences, immune system challenges metabolic concerns, and respiratory, skin, and food allergies; moreover, those with ASD are less likely to receive preventive care and more likely to end up in the emergency department.4,7–9 Thus, persons with ASD who are transitioning into the adult healthcare system are likely to interact with a variety of primary care, specialty care, and mental health providers. Helping providers learn how to support their patients with ASD may improve morbidity and mortality in this at-risk population.2

Youth with ASD face a number of challenges and ongoing medical and behavioral health difficulties as they mature into adulthood. Given what we know about healthrelated quality of life in those with ASD, it is important for  practitioners to be mindful about how to support and guide transitioning youth to maintain their health and improve their quality of life. Given the aforementioned prevalence rates of comorbid medical conditions in those with ASD, it is common to have a plethora of pharmacologic therapies. Medication regimens requiring strict adherence, such as psychotropic, anti-epileptic, and diabetic medications (among others), and it is especially important for adults with ASD to receive clear, concise, and direct instructions around T1 medication usage (see Table 1 for specific examples).

Preparing individuals for the transition to independently managing their health is a critical component to pediatric care; unfortunately, this is often implemented with poor fidelity or overlooked entirely.10 Individuals with ASD may be especially vulnerable to falling through the cracks. As such, practitioners are oftentimes poised to help young adults reengage in self-managed healthcare. Fostering independence as well as compliance with medical  management can impact quality of life more broadly. Even if providers do not have specific experiences with the ASD population, practitioners may be able to draw upon the skills they have developed in working with other vulnerable populations (e.g., those with chronic health conditions, elderly populations, and individuals with neurological injuries).

Research regarding how to manage healthcare in the ASD population is still emerging; however, this topic is on the forefront of research agendas. Recent research indicates a lack of training for providers in how to effectively work with individuals with ASD and specific guidelines are needed around the development of best practices.10 Table 1 summarizes facets of ASD symptomatology that may lead to difficulties with interaction with the healthcare system and possible accommodations.

System-based coordination, such that primary care is a vital cog in a multidisciplinary wheel, is critical to providing optimal service. It is not uncommon for children to receive multiple therapies during their development from rehabilitation therapists and behavior specialists, among others. As the individual with ASD transitions from his/her general pediatric care to a primary care practitioner in adulthood, vigilance by nursing or office managers, in addition to the primary care practitioner, will be important for HRQOL. Young adults with ASD may begin to utilize more, or at least independently, various medical specialists for common comorbid medical disorders previously mentioned (e.g., pulmonology).

In the case of medication adherence, it is important for the prescribing practitioner and the pharmacist to  communicate regarding information about how to best serve their mutual patient. For example, it may be helpful for the provider to gain information as to how the patient prefers to give and receive information, as some individuals with ASD prefer visual aids, verbal instructions, email, or written communication. Moreover, it is also important to ensure that providers take time to develop rapport and outline the purpose of the visit and expectations of the  patient. For example, introducing your role (e.g., “I am the pharmacist who will be talking to you about how to take your medications”) and clarifying the patient’s role (e.g., “You will need to understand the instructions, ask me  questions, and explain back to me how you are supposed to follow the medication instructions”). Although the  previous example may seem overly simplistic, research shows that simple processes like this are not commonly  occurring. Simple interventions and provider education may help address issues that lead to morbidity and mortality in young adults with ASD. With active coordination from caregivers and healthcare professionals (and early  planning), individuals with ASD may be better prepared as they enter into adulthood.

In summary, there are many barriers for adults with ASD in accessing healthcare and utilizing healthcare effectively. As children with ASD become young adults, it will be important for healthcare providers to be aware of specific issues that may be impacting their patients, because the core symptoms of ASD may impact access to care, adherence, morbidity, and mortality. Within our clinical practice, we often hear from individuals with ASD that the healthcare system could be more effective if their healthcare team better understood their life perspective and needs. Further research is needed, especially regarding the best ways to implement supports within the medical system, disseminate and educate health professionals about specific issues regarding ASD, and integrate community  participatory research with young adults with ASD.


Table 1 Provider considerations in working with individuals with ASD

Possible difficulties
Sensory sensitivities lead to being overwhelmed by a crowded noisy waiting room

Possible accommodations
Offer patients an alternative to an overstimulating waiting room

Possible difficulties
Expressive communication, difficulty expressing symptoms or concerns Receptive skills, difficulty understanding forms, follow-up plans, and medication management

Possible accommodations
Allow patients to communicate with a preferred method (e.g., email, typing, or writing)
Offer opportunity for patient to bring a supportive person or collateral information source and clarify the role of this support person
Clarify information obtained on forms
Use very specific and precise language
Provide step-by-step written instructions for how to obtain tests, referrals, or medications as well as dosing information
Visually based information may be more concrete and helpful (e.g., pictures of medications)
Allow additional time for the patient to process information and then clarify with, “what questions do you have?”

Possible difficulties
Rigidity, difficulty with change

Possible accommodations

Ensure sufficient warning of changes in personnel, office environment, and
providers


1Oregon Health & Science University, Portland, Oregon, USA. Correspondence: T Hall (halltr@ohsu.edu)


© 2015 ASCPT
1. American Psychiatric Association. Diagnostic and Statistical Manual of Mental Disorders (DSM-5VR ). American Psychiatric Pub (2013).
2. Nicolaidis, C. et al. “Respect the way I need to communicate with you”: healthcare experiences of adults on the autism spectrum. Autism (2015); e-pub ahead of print.
3. Hobson, R.P. Autism, literal language and concrete thinking: some developmental considerations. Metaphor Symb. 27, 4–21 (2012).
4. Kuhlthau, K. et al. Health-related quality of life in children with autism spectrum disorders: results from the autism treatment network. J. Autism Dev. Disord.40, 721–729 (2010).
5. Bauminger, N., Shulman, C. & Agam, G. Peer interaction and loneliness in highfunctioning children with autism. J. Autism Dev. Disord. 33, 489–507 (2003).
6. Buck, T.R. et al. Psychiatric comorbidity and medication use in adults with autism spectrum disorder. J. Autism Dev. Disord. 44, 3063–3071 (2014).
7. Oyane, N.M. & Bjorvatn, B. Sleep disturbances in adolescents and young adults with autism and Asperger syndrome. Autism 9, 83–94 (2005).
8. Delahaye, J. et al. The relationship between health-related quality of life and sleep problems in children with autism spectrum disorders. Res. Autistic Spectr. Disord. 8, 292–303 (2014).
9. Kohane, I.S. et al. The co-morbidity burden of children and young adults with autism spectrum disorders. PLoS One 7, e33224 (2012).
10. Warfield, M.E., Crossman, M.K., Delahaye, J., Der Weerd, E. & Kuhlthau, K.A. Physician perspectives on providing primary medical care to adults with autism spectrum disorders (ASD). J. Autism Dev. Disord. 45, 2209–2217 (2015).

Leave a Reply