A Call to Action: The Need for Advocacy in Healthcare Access in Autism

Although specific estimates vary substantially, autistic children and adults have a higher prevalence of comorbid medical conditions than those reported in non-autistic individuals. Among the most commonly reported comorbid medical conditions are neurological disorders, including epilepsy, gastrointestinal (GI) conditions, allergies, otitis media, metabolic disorders, and sleep disturbances (Bauman, 2010; Soke, 2018). Individuals with autism also have a higher mortality risk, largely driven by accidental injury and death, but also likely due to underlying health conditions (Al-Beltagi, 2021).

Challenging behaviors, such as self-injurious behavior (SIB), are more likely to occur in individuals with more complex physical health and many studies have reported relationships between SIB and underlying medical conditions (see Charlot et al., 2011; May & Kennedy, 2010; for a review). Some researchers suggest that autistic individuals with SIB should be further evaluated for medical conditions that could be contributing to SIB (Bauman, 2010; Alberts & Kettering, 2022).

Although autistic individuals have increased contact with healthcare providers for both emergency and nonemergencies, they tend to have more unmet healthcare needs and overall poorer quality healthcare that impact the overall quality of life (Nicolaidis et al., 2015, Walsh et al., 2020). Despite knowledge that certain medical conditions occur at a higher rate in autistic individuals, diagnosing medical conditions can be difficult. Communication difficulties may affect a person’s ability to self-report symptoms (May & Kennedy, 2010, Nicolaidis et al., 2015; 2016; Walsh et al., 2020). Sensory processing differences may impact an autistic person’s ability to detect pain or accurately locate discomfort (Bauman, 2011); challenging behavior and compliance with medical procedures and exams may also result in difficulty in having successful exams. There is also some evidence that medical conditions may present differently in autistic individuals, suggesting that healthcare professionals (HCP) may have more difficulty identifying a medical condition or illness, even when a successful exam does occur (Bauman, 2011).

In survey research, autistic adults and the caregivers of autistic children also report that comfortability of autistic individuals during appointments may impact the success of the visit. Sensory concerns with physical space, including lighting or crowded waiting rooms, may also impact the success of a medical appointment (Saqr et al., 2018; Walsh et al., 2020). Both autistic adults and caregivers of autistic children also note a lack of knowledge and training for HCP as barriers to care (Walsh et al., 2020). A lack of flexibility for accommodations, negative attitudes, and misinterpretation of behaviors are commonly reported (Saqr et al. 2018; Walsh et al., 2020).

Advocacy Recommendations

Given the barriers to quality healthcare and the increased prevalence of medical comorbidities in autistic individuals, an increase in advocacy in access is critical. Advocacy requires the collaboration of HCPs and behavioral health practitioners (e.g., Board Certified Behavior Analysts) alongside autistic individuals and their caregivers.

Recommendations for Healthcare Professionals

When it comes to advocacy by HCPs, individual practitioners may be limited in some areas of advocacy efforts by system or payor requirements (e.g., number of billable appointments per day, reimbursable activities). In what follows, we provide general recommendations for advocacy and encourage consideration of how greater system-level modifications may increase the likelihood of sustainable change. Recommendations are aimed at increasing the likelihood of a successful and comprehensive appointment that results in an improved healthcare experience for both the patient and HCP.

Additional Training – Surveys of both autistic adults and HCPs have noted that HCPs are often unprepared to see patients with autism (Zerbo et al., 2015). In 2022, medical students in both the US and UK reported that they do not receive enough autism-specific training during medical school and have low confidence in treating autistic individuals (Malik-Soni et al.). With the increased incidence of autism, all HCPs should assume that they will treat autistic individuals. Until universal autism training becomes a consistent part of pre-service training, practitioners should seek out training, including continuing medical education credits focused on increasing competence to treat individuals with autism.

Awareness and Preparation – It is important that HCPs have awareness of their autistic patients’ preferences and concerns such that they can develop accommodations to improve the healthcare experience for both the patient and themselves. HCPs should consider existing screening and scheduling processes and determine whether or not the process allows the provider to adequately prepare for appointments with autistic patients. For example, HCPs may be better prepared for an appointment if they have an understanding of the patient’s communication abilities (e.g., spoken language, alternative and augmentative communication) and sensory needs.

The use of a questionnaire (e.g., the Autism Healthcare Accommodations Tool; AHAT) or phone interview prior to an appointment is one way for HCPs to ensure awareness of preferences and concerns. Nicolaidis et al. (2016) found the use of the AHAT, which guides autistic individuals or their caregivers to create a unique accommodations report for their HCP, resulted in improved healthcare experiences.

Individual Accommodations – HCPs might extend appointment length to allow for the additional time or schedule multiple appointments that may often be needed for autistic individuals to become accustomed to the environment and willing to cooperate with necessary components of evaluation. For example, caregivers of autistic individuals who cannot self-report symptoms or who may engage in challenging behavior may prefer to meet with the HCP first to discuss concerns and review medical history prior to bringing their child to an appointment, which can be overwhelming for caregivers (Walsh et al., 2020).

We recommend that HCPs accommodate individual preferences identified prior to the appointment but also consider some standard practices such as incorporating choices during appointments (Rispoli et al. 2013). For example, HCPs may provide the choice of waiting in the car instead of the waiting room, a choice between where to sit in the exam room (e.g., a chair instead of the exam table), or what examination procedure to conduct first. For those that do have the ability to communicate symptoms, HCPs should also be open to communicating in the way that the individual is most comfortable (e.g., reviewing written notes that they bring to the appointment, Nicholadis et al., 2015).

Diagnostic Considerations – The HCP should be aware of behavioral needs and the patients’ specific topographies of SIB or aggression. It is important to understand that these challenging behaviors should not just be attributed to autism, but could be correlated with underlying medical causes such as pain or discomfort from allergies, headaches, or constipation (Al-Beltagi, 2021; Nicolaidis et al. 2016). For example, HCPs may consider the use of an observation checklist, such as the Risk Assessment Checklist for Self-Injury in Autism-Medical (RACSA-M; Alberts & Kettering, 2022), to gather information on possible behavioral indicators of underlying medical comorbidities.

It is critical for HCPs to understand the possible need for additional diagnostics for patients who cannot self-report symptoms. While some individuals may engage in SIB, others may not have clear observable symptoms or observed symptoms may differ that those typically used for diagnostic purposes. SIB, when it does occur, may not always correlate with the location of the underlying condition. For example, the HCP may need to refer the patient to a specialist (e.g., otolaryngologist, GI) with experience working with autistic individuals to rule out possible medical comorbidities, especially if those individuals have SIB. Overall, HCPs should consider more comprehensive exams and testing, especially for medical conditions that are an increased risk for the population. For example, allergy and food sensitivity screenings as a standard assessment due to the inability to report GI pain (Al-Beltagi, 2021).

Recommendations for Behavioral Health Practitioners and Caregivers

Autistic individuals often receive therapies (e.g., applied behavior analysis) during which behavioral health practitioners (BHPs) have recurring appointments with the individuals and their caregivers. This ongoing and collaborative relationship that BHPs often have with autistic individuals and their caregivers positions them to have a significant role in healthcare advocacy for the population.

Awareness – To ensure full awareness, BHPs should design data collection systems in a way that may help to identify underlying medical conditions (e.g., challenging behavior). For example, practitioners should separate data collection for different topographies of challenging behavior. That is, instead of using the broad category of tantrum, consider collecting data separately on yelling and SIB or separate head- and body directed SIB. To identify these changes, BHPs may need to modify the way in which they graphically depict the data. For example, they may change from analyzing the data as responses per minute to responses per day and be in a better position to identify possible cyclical patterns of responding possibly related to a medical condition (e.g., menstrual cycle; May & Kennedy, 2010).

It is also important that BHPs familiarize themselves with behaviors and symptoms that may be correlated with underlying medical conditions and design data collection systems to monitor these when necessary. This data collection may go beyond the targets of the behavior interventions. For example, collecting data on stool consistency (e.g., Bristol Stool Chart; Lewis & Heaton, 1997), repetitive eye blinking, or excessive sleepiness (Copeland & Buch, 2019) that may correlate with medical conditions.

BHPs should also be aware of patients’ past and current medical conditions and treatments (e.g., psychopharmacological intervention). When graphing relevant behaviors, providers should graphically indicate times when changes to medical treatment (e.g., increase in medication dosage) occurred to allow for visual analysis of the possible impact of the change.

Collaboration – Practitioners should conduct frequent and ongoing collaboration with the autistic individual and their caregivers as well as with HCPs. Collaboration is especially important for individuals who cannot self-report symptoms as the collaborations can result in increased advocacy and earlier detection of possible medical comorbidities. We recommend that BHPs consider the following recommendations:

  • Hold regular caregiver meetings to ask about concerns and discuss possible behavioral indicators of underlying medical comorbidities (e.g., RACSA-M; Alberts & Kettering, 2022).
  • Assist families in setting up data collection systems for home that may help answer medical questions (e.g., sleep logs).
  • Develop written reports or summaries of data on behavioral indicators that families can provide to HCPs.
  • Encourage families to stay up to date on well checks and request appointments when behavioral indicators may suggest a medical comorbidity.
  • Guide families through resources and tools such as the AHAT (Nicolaidis et al., 2016) or RACSA-M (Alberts & Kettering, 2022).
  • Request permission to communicate with HCPs to provide data summaries and consider attending appointments when a caregiver requires additional assistance.
  • Partner with HCPs on the development of additional research or tools to help continue to raise awareness of medical comorbidities (Alberts & Kettering, 2022; Copeland & Buch, 2019)
  • In cases where caregivers have expressed that challenging behavior interferes with autistic individuals successfully accessing healthcare, behavioral health providers should consider targeting medical appointment success as a treatment goal.

Conclusions

Meeting the healthcare needs of autistic children and adults may require a more comprehensive and individualized approach to care and diagnosis. Through training, awareness, accommodations, and collaboration, practitioners may better advocate to meet the needs of autistic individuals.

Tracy Kettering, PhD, BCBA-D, is Director of the Applied Behavior Analysis Center of Excellence at Bancroft and an adjunct professor and research supervisor at Rider University. Ashley Fuhrman, PhD, BCBA-D, is Director of Severe Behavior at Trumpet Behavioral Health. Christopher Perrin, PhD, BCBA-D, is Sr. Board Certified Behavior Analyst at Bancroft and an adjunct professor and research supervisor at Rider University.

For questions of information, please contact tracy.kettering@bancroft.org.

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