Navigating the American healthcare system is a challenging task for neurotypical (NT) and neurodiverse (ND) communities alike; however, there are substantially greater barriers to effective care and risk factors identified within the ND community. Research has shown that there are higher mortality rates among Autistic individuals (DaWalt et al., 2019), suggesting that current systems contain barriers to accessing effective care. According to self-report measures, 80% of autistic adults report experiencing a challenge when visiting a general practitioner (Doherty et al., 2022). Over half of autistic adults report experiencing communication challenges with physicians. Ongoing research continues to explore the nature of these barriers to determine possible explanations; however, a systemic review of previous research and stakeholder community sampling reveals several key findings for identifying a pathway toward improved self-advocacy in healthcare for autistic individuals and their caregivers (Benevides et al., 2020). Dr. Teal Benevides was generous enough to join me for an interview to review some of these key findings and to highlight some relevant points to inform self-advocacy strategies discussed throughout this article (personal interview, February 12, 2024).
One of the key findings from stakeholder research reveals: Mental health is health. As such, beginning from a place of connecting within one’s own community to focus on supporting access to resources and one’s own overall mental health is a foundational first step toward effective self-advocacy. The external resources that one can access through their community can be a substantial way to enhance mental health and, in turn, support overall health. A sense of community and connection to things other than oneself allows for one to feel a purpose outside of their sense of self. Obtaining peer support has been identified as the preferred method of external support, meaning connecting with other neurodiverse individuals is crucial for mental health.
Community-Based Resources to Consider
- Art and expression-based activities
- Yoga
- Animal experiences (i.e., horseback riding, connecting with animals in shelter)
- Nature-based activities
- Virtual and in-person peer-led support groups
When it comes to navigating standard and routine healthcare appointments, the main barriers to effective medical visits reported by autistic adults when surveyed include understanding if symptoms are severe enough to visit a doctor, struggles with making appointments over the phone, not feeling understood, challenges with communicating with the physician, and the atmosphere of the environment (Doherty et al., 2022). Various complementary approaches are utilized to combat these barriers proactively and prevent adverse health outcomes; however, it is important to note that it begins by feeling empowered to make choices regarding healthcare providers. If a provider does not show an understanding of your neurodiversity, communication preferences, and sensory processing needs, it is acceptable (and perhaps even advisable) to meet with another provider and explore your options. The goal of the tools identified below is to make healthcare accessible, effective, and lower possible risks of things being missed or misunderstood.
Proactive Tools For Your Toolbox
- Prepare a written list of questions and/or concerns for the physician
- Create an “all about me” document for moments when language is less accessible
- Print and fill out a body map to reflect where you might experience pain or other body sensations
- Bring a support person (i.e., family member, trusted friend/neighbor, caregiver) who is aware of your personal goals and needs to aid with any communication gaps
- Identify your preferred communication method and explore how your provider can support implementation (i.e., communication via patient portal or email versus phone)
- Request to wait in the car or in a room where you can regulate light/sound while waiting for the provider
- Inquire if your provider has received training in the SHARE approach to client-provider decision-making AHRQ SHARE Training to explore collaborative approaches to navigating your care
Autistic individuals are more likely to visit an emergency department (ED) compared to those without autism (Nicolaidis et al., 2013). There are several reasons why Autistic adults may be at risk of a lesser experience when visiting the emergency room compared to their non-autistic counterparts. According to Vohra et al. (2017), co-occurring presentations, including intellectual disabilities, depression, anxiety, ADHD, substance dependence disorder, and symptoms associated with autism make for a more difficult experience when visiting emergency department services. In addition to co-occurring psychiatric presentations, Autistic adults are at a greater risk for physical comorbidities like diabetes, cardiovascular conditions, and high cholesterol, leading to increased and less-than-ideal emergency department visits. Many autistic individuals experience behaviors like aggression, destruction, self-inflicted injuries, and other self-injurious behaviors, which may often require immediate and urgent care (Vohra et al., 2017). As a result of these self-injurious behavior patterns, there is an increased possibility of emergency department visits (Matson and Rivet, 2008). Furthermore, Autistic adults are at greater risk of receiving psychiatric assessments in emergency departments due to the nature of the emergency department itself eliciting sensory overload emotional, and behavioral dysregulation. This by no means that the ED should be avoided; however, it is an indicator that when emergency care is warranted, entering into the ED with preparation will facilitate improved access to care and effective self-advocacy.
Tools for Emergency/Crisis Settings
- Prepare an “all about me” document for emergency/crisis settings that shares both autism-related needs AND relevant history (i.e., history of prior hospitalizations, history of recurring conditions)
- Request for a supportive friend, family member, or caregiver to remain with you to support communication needs
- Keep an updated medication list available to be produced when needed to lower the demand to recall crucial information in the moment
Medication management is an area of identified risk for ND populations, and Dr. Benevides identifies the risk for polypharmacy is increased for those with variable communication patterns in medical settings. Having specific strategies to manage medication and communicate with providers is a key component of self-advocacy when managing multiple providers who prescribe medication. In the United Kingdom, an initiative to prevent and reduce overmedication, and the more we understand the efforts being put into this, the better we can advocate here (UK STOMP Initiative).
Strategies for Medication Management
- Maintain an updated list of all current medications, what they are prescribed for, and current responses, as well as a list of historical medications, side effects, and reasons for discontinuation
- Write questions in advance of appointments if possible
- Ask trusted family, friends, and caregivers to provide observations of your response to medications to allow for improved awareness of the impact (strategy for navigating interoceptive processing differences)
Accessing mental health support is a key component of overall health and another that is rife with barriers to effective care. Medical systems (i.e., psychiatric facilities and crisis teams) have not always received training in support for ND populations, which means the autistic experience in these settings is not always effective. Despite this, this should not prohibit you from searching for care when needed.
Self-Advocacy in Mental Health Tools
- Search for neurodiversity-affirming providers (PsyPact is a way of finding psychologists licensed in other states who are approved for telehealth across state lines)
- Suicidality resources and visual aids to reflect on reasons for living can be found here: Autism Crisis Support Resources
- The 988 crisis hotline has received some consultation on how to support ND adults (it is still a work in progress, but it is a resource that exists and should be used when needed)
- Milestones Autism Resources has generated many digital tool kits to support navigating systems, but this Mental Health Toolkit is a starting point
It is important to understand that this is not an exhaustive list of self-advocacy strategies, and in fact, there is still ongoing research to be done. Additionally, while most complementary and alternative approaches to medicine (CAMs) have not yet been researched in Autistic individuals, it is important to feel empowered to explore supports related to sleep, nutrition, yoga, exercise, supplements, and working with providers who have expertise in understanding best practices in these areas to support the exploration of approaches to individualized implementation when needed. Finding providers who are willing to collaborate with you to explore these strategies is another component of self-advocacy when navigating healthcare systems. Finding your voice in the face of systems that have not been designed to support ND individuals is a challenge, but there is work being done in the clinical, research, and stakeholder communities to assist with improving your access to systems and healthcare while also identifying these self-advocacy strategies.
Lastly, warm thanks are offered to Dr. Benevides for generously contributing her time to offer her professional expertise in guiding many of the self-advocacy points identified in this article.
Katherine Cody, PsyD, is a Licensed Psychologist, and McKenzie Gelvin is a Predoctoral Extern at Spectrum Psychological Services. To reach Dr. Cody, email drcody@spectrumpsychservices.com.
References
Benevides, T. W., Shore, S. M., Palmer, K., Duncan, P., Plank, A., Andresen, M.-L., Caplan, R., … & Coughlin, S. S. (2020). Listening to the autistic voice: Mental health priorities to guide research and practice in autism from a stakeholder-driven project. Autism, 24(4), 822-833. https://doi.org/10.1177/1362361320908410
Benevides, T.W., Shore, S.M., Andresen, M-L., Caplan, R., Cook, B., Gassner, D.L.,…& Wittig, K. (2020). Interventions to address health outcomes among autistic adults: A systematic review. Autism, 24(6): 1345-1359. https://doi.org/10.1177/1362361320913664
DaWalt, L., Hong, J., Greenberg, J., & Mailick, M. Mortality in individuals with autism spectrum disorder: Predictors over a 20-year period. (2019) Autism, 23(7): 1732-1739. doi: 10.1177/1362361319827412
Doherty, M., Neilson, S., O’Sullivan, J., Carravallah, L., Johnson, M., Cullen, W., & Shaw, S. C. K. (2022). Barriers to healthcare and self-reported adverse outcomes for autistic adults: a cross-sectional study. BMJ open, 12(2), e056904. https://doi.org/10.1136/bmjopen-2021-056904
Matson JL, Rivet TT. Characteristics of challenging behaviors in adults with autistic disorder, PDD-NOS, and intellectual disability. Journal of Intellectual & Developmental Disability. 2008;33(4):323–329. doi:10.1080/13668250802492600; 10.1080/13668250802492600.
Nicolaidis, C., Raymaker, D., McDonald, K., Dern, S., Boisclair, W. C., Ashkenazy, E., & Baggs, A. (2013). Comparison of healthcare experiences in autistic and non-autistic adults: a cross-sectional online survey facilitated by an academic-community partnership. Journal of General Internal Medicine, 28(6), 761–769. https://doi.org/10.1007/s11606-012-2262-7
The SHARE Approach. Content last reviewed March 2023. Agency for Healthcare Research and Quality, Rockville, MD. https://www.ahrq.gov/health-literacy/professional-training/shared-decision/index.html
Vohra, R., Madhavan, S., & Sambamoorthi, U. (2016). Emergency Department Use Among Adults with Autism Spectrum Disorders (ASD). Journal of autism and developmental disorders, 46(4), 1441–1454. https://doi.org/10.1007/s10803-015-2692-2
