People with autism spectrum disorder (ASD) and other developmental disabilities have poorer health and face unique barriers to health care compared to people without disabilities. These health disparities can be partially attributed to physicians' limited knowledge about caring for patients with developmental disabilities. The purpose of this study was to determine the effectiveness of ASD training for medical students. Our training included a lecture and a panel presentation that featured people with ASD and family members. Students reported improved knowledge, skills, confidence, and comfort in caring for patients with ASD.
People with autism spectrum disorder (ASD) and other developmental disabilities (DD) face disparities in health and access to quality health care. Adults with developmental disabilities are more likely than adults without disability to have a variety of healthcare needs (U.S. Public Health Service, 2002), including unhealthy weight (Bhaumik, Watson, Thorp, Tyrer & Mcgrother, 2008; Yamaki & Taylor, 2005), physical inactivity (Havercamp & Scott, 2015), inadequate emotional support (Havercamp & Scott, 2015; Stancliffe et al., 2007), epilepsy (McGrother et al., 2006), mental illness (Cooper, Smiley, Morrison, Williamson, & Alan, 2007), and overall poor health (Havercamp & Scott, 2015). Although few studies have reported on the health of adults with ASD, one study found young adults with high functioning ASD to have poorer health-related quality of life compared to the normative sample of adults in the domains of physical health, psychological health, and social relationships (Kamp-Becker, Schröder, Remschmidt, & Bachmann, 2010).
Health disparities for patients with ASD and other developmental disabilities may be attributed to their limited ability to participate in their own health care due to communication difficulties, limited comprehension, and behavioral difficulties (Lunsky, Emery, & Benson, 2002; Raposa, 2009). The inability to effectively communicate one's distress or discomfort makes the recognition, diagnosis, and treatment of health problems challenging for people with DD, their caregivers, and healthcare providers (Ouellette-Kuntz, 2005). Once the distress message is successfully delivered, then a treatment plan must be communicated back to the patient, understood, and followed (Lennox & Kerr, 1997). In addition to communication difficulty, people with ASD may display problem behaviors that could be symptomatic of a psychiatric or physical disorder (McClintock, Hall, & Oliver, 2003) or indicative of communication frustration. Patients with ASD often present with complex problems, which are exacerbated by the increased time required to obtain a history and physical exam. Healthcare providers report feeling unprepared, uncomfortable, and overwhelmed by the complex needs of patients with ASD and DD, which negatively affect quality of care (Boreman, Thomasgard, Fernandez, & Coury, 2007; Bruder, Kerins, Mazzarella, Sims, & Stein, 2012; Golnik, Ireland, & Borowsky, 2009; Shah, 2001; Wilkinson, Dreyfus, Cerreto, & Bokhour, 2012). Societal attitudes toward disability (Wilson & Scior, 2014), as well as those of healthcare providers, tend to be negative and may compromise treatment (French, 1994; Gething, 1992; Tervo, Azuma, Palmer, & Redinius, 2002). The need for ASD training to improve the quality of care for these patients was widely expressed by healthcare providers (Bruder et al., 2012; Golnik et al., 2009).
There is a small body of literature addressing what healthcare providers should know about ASD and other developmental disabilities and less on how such content is best taught. Lennox and Diggens (1999) identified core competencies in intellectual disabilities for undergraduate medical students that included objectives pertaining to knowledge, skills, and attitudes. Similar objectives for disability broadly defined were identified by researchers in the United States (Kirschner & Curry, 2009; Minihan et al., 2011).
In a survey of United Kingdom medical school curriculum, Lennox and Diggens (1999) found that most intellectual disability content was covered in didactics, although the authors pointed out that firsthand experience working with people with intellectual disability was necessary to develop skills and improve attitudes. Khatan et al. (1994) reported on innovative teaching practices in the United Kingdom in the area of disability and rehabilitation. In a survey of all 23 medical schools, the authors found that medically led lectures and seminars were most commonly used but that schools also used clinical examination and history taking of patients with disability, visits to centers and disability service agencies, small-group teaching led by community members with disabilities, and home visits with families that included a person with a disability. One of the more innovative programs included a drama workshop led by actors who had intellectual disabilities (Hall & Hollins, 1996). In that program, medical students had face-to-face contact with adults with intellectual disability and saw them in socially valued roles of teachers and leaders. Students also prepared an ethics debate about a complex clinical dilemma, participated in small-group seminars conducted in partnership with a parent, and conducted a home visit in pairs. The course focused on improving attitudes toward and skills communicating with adults who had intellectual disabilities.
In Australia, much work has been done to provide disability training to future healthcare providers (e.g., Tracy et al., 2008). In one study, Tracy and Iacono (2008) evaluated a communication-skills training session for fourth year undergraduate medical students that included direct contact with people with developmental disabilities in a valued role (tutor), followed by a structured discussion. They found that students evaluated the session very positively and reported being more comfortable interacting with people with disabilities after the session.
In the United States, Woodard, Havercamp, Zwygart, and Perkins (2012) developed a primary-care clerkship on developmental and other disabilities that included lecture, model patients with disabilities, disability-related community site visits, service learning for adults with intellectual disabilities, and home visits. Significant changes in medical students' disability knowledge, attitudes, and comfort level were found over this 6-week module. Eddey, Robey, and McConnell (1998) trained adults who were nonverbal due to cerebral palsy to portray common ailments in standardized patient encounters. After a discussion about effective communication with patients who were nonverbal, third-year medical students were asked to establish a mode of communication, establish rapport, question the individual about symptoms and medical history, conduct a directed physical examination, and arrive at a preliminary diagnosis. The students' ratings on a semantic differential scale completed before and after the session moved toward greater comfort and skill and toward more rational and objective approaches to the patient. Sharma, Lalinde, and Brosco (2006) sent medical trainees to visit the homes of children with disabilities to challenge limiting attitudes about disability.
The importance of including people with disabilities and family members in training efforts was universally emphasized in these and other studies (Long-Bellil et al., 2011; Symons, McGuigan, & Akl, 2009). In addition to this person-centered training element, medical education research has explored best practices in teaching about professional values and attitudes. Birden et al. (2013) identified role modeling and personal reflections as being the most effective. Experiential learning is a process by which learning occurs by having an experience, such as an encounter with a patient with a disability. However, the experience must be interpreted and integrated into existing knowledge structures to become new or to expanded knowledge. Reflection is crucial for this active process of learning. Reflection, in essence, is a deliberate process used to develop an understanding or to make sense of a situation so that future actions can be informed (Sandars, 2009). Reflection may be guided by a conversation with a supervisor or a written exercise.
Previous literature has focused on intellectual disability; at the time of this writing, neither quantitative nor qualitative data have been reported about the effect of educating medical students on caring for patients with ASD. Only Shah (2001) reported on medical students' autism awareness at different stages of their medical career, without implementing any additional training focused on patients with ASD. We designed a brief ASD encounter for third-year medical students (N = 99) that included people with ASD and family members in teaching roles discussing the healthcare needs of children and adults with ASD. Our goals for this training were to help students feel more comfortable and confident providing care to children or adults with ASD. The training included a lecture on ASD and a facilitated panel discussion. In keeping with previous research, we included people with ASD and their family members in the training and used written reflections as part of our evaluation. The perceived benefit of this training in terms of student satisfaction, comfort, and perceived skills is reported in this article. Variables such as gender, race, and knowing someone with a disability were taken into account to further explore differences in student perceptions about the experience.
A total of 99 third-year medical students at The Ohio State University attended the training (online lecture covering ASD diagnostic criteria and medical home followed by a panel discussion with professionals, people with ASD, and family members on the healthcare needs of children and adults with ASD). Their age ranged from 23 to 37 years (M = 25.5, SD = 2.25). Information regarding other demographic characteristics such as gender, ethnicity and previous knowledge about disability is presented in Table 1.
We provided online lectures and panel discussions from April to September of 2013 as a required (not elective) component of the medical curriculum within the ambulatory care rotation. Panels consisted of a facilitator (a developmental-behavioral pediatrician) and four to five panel members made up of adults with ASD and parents of children with ASD. We recruited panelists from local autism organizations and community support groups; panelists volunteered their time. Panel discussions ranged from 45 min to 1 hr, with 15 min for student questions. Although panel discussions were not scripted, we guided the discussion to certain topics that have been identified in the scientific literature as a concern in healthcare encounters with patients with ASD and their families. These topics included: effect of diagnosis, misconceptions, and stigmas associated with ASD diagnosis; acute healthcare experiences; and best and worst experiences with medical professionals, medications, therapy, community services, transition to adult services, and healthcare financing. Before the panel encounter, we asked students to view an online ASD lecture by a developmental behavioral pediatrician that described features of ASD, the value of a medical home, and patient-centered care.
In the month following the training, students completed 10 closed-ended questions about the experience and wrote a brief (100–250 word) reflection about its effect on their medical education and future practice.
The Ohio State University Behavioral Science Institutional Review Board approved this study.
Medical students completed a survey (see Table 2) composed of 10 closed-ended questions about the following: (a) perceived effect of the training (these questions asked about change in disability knowledge, confidence and comfort, skills, and ability to provide better care to patients with disabilities); (b) their interest in working with people with disability in the future; (c) the quality and their satisfaction with the panel experience; and (d) one question about the extent to which further disability training would benefit their future practice.
Finally, every student wrote a brief (100–250 word) reflection about the educational experience and the effect on their medical education and future practice. Their reflections were analyzed by qualitative procedures to identify important topics to be covered in future trainings and aspects to improve.
We used a mixed methodological approach, which involves the collection, analysis, and integration of both qualitative and quantitative data in a single study. Qualitative (students' 100–250 word reflections) and quantitative (closed-ended questions) data were collected at the same time. This approach aims to broaden and triangulate research findings in a way that sheds more light on these findings (Schifferdecker & Reed, 2009).
We carried out quantitative analysis of student feedback (N = 99) using SPSS Statistics 21 and assessed differences in categorical variables using Chi-square tests and computed means and standard deviations for continuous variables. Pearson's chi-square test was used to examine whether there was an association between two categorical variables (e.g., gender and previous knowledge about disability). To do so, some variables with multiple categories (e.g., race/ethnicity) were recoded into two broad categories (white/nonwhite).
With the goal of analyzing differences in student perceptions about the training as a function of variables such as gender and race/ethnicity, and because some response categories were never used (e.g., very negative change), we recoded students' responses into: 0 (no change or negative change) and 1 (positive or very positive change) for quantitative analyses.
We analyzed students' reflections using QSR NVivo software (version 10; QSR International, 2012). Data analysis (i.e., coding) involved organizing raw data into categories (Baralt, 2011) by reading and discussing recurrent themes. Using themes as the coding unit meant that we assigned the text (regardless of size) to a specific category as long as it represented a single theme of relevance to our research (Zhang & Wildermuth, 2009). Although categories were defined to be as externally heterogeneous as possible, on some occasions, we assigned the text to more than one category. We derived categories inductively (Pope, Ziebland, & Mays, 2000) by constant comparison of the students' comments among three researchers. The three researchers discussed disagreements and, as suggested by Baralt (2011), they refined and restructured the coding scheme.
The researchers finally identified nine main themes (called parent nodes in Nvivo) and subthemes (or child nodes) for five out of the nine main categories. The final coding framework (Table 3) was used to code the rest of the dataset. Interrater reliability was established using Cohen's Kappa coefficient on 50% of the dataset that was coded by two authors. We interpreted the Kappa coefficient according to the following criteria (Viera & Garrett, 2005): Slight agreement (< .20), fair agreement (.21–.40), moderate agreement (.41–.60), substantial agreement (.61–.80), and almost perfect agreement (≥ .81). Kappa values ranged from moderate to almost perfect agreement (.53–.97).
Students reported very positive or positive changes associated with the training with respect to caring for patients with developmental disability in all of the closed-ended questions: knowledge about what to do or say, understanding challenges faced, confidence and comfort, skills to help patients, ability to communicate with patients, and ability to provide better care (Figure 1). However, males were less likely to report positive or very positive changes in their competences after the experience (Table 4) especially when they were asked about their level of understanding of the challenges individuals with ASD and their families face, or their communication skills to work with this population. Gender influenced the perceived benefits of the training more than previous personal or professional knowledge about disability; in fact, no differences were found between those who had previous knowledge about disability (personal or professional) and those who did not have this knowledge with respect to perceived positive changes in the aforementioned competences.
With regard the closed-ended questions about their interest in future work with people with disability, about the quality of the training, and the perceived benefit of further disability training, results varied by gender and by having previous disability knowledge. Males were more likely to question the benefit of future training, and students without previous professional knowledge about disability were significantly more likely to rate the training as good or excellent (Table 5). When asked about their interest in working with people with ASD in the future, students with previous personal knowledge about disability were significantly more likely to be interested in working with this population than those without this background (Table 5).
Because having met someone with a disability personally seems to influence students' willingness to work with this population in the future, and females reported more positive changes after the training, we explored demographic differences in knowing someone with a disability. No statistically significant differences were found in this sample regarding knowledge (either professional or personal) about disability by gender or race/ethnicity.
Table 3 shows a selection of quotes from students' reflections and includes the text coverage or the percentage of the entire text (discourse) that was coded under each specific theme and subtheme. The number of students addressing or citing each theme is also listed.
Students most frequently reported better understanding of ASD (specifically those symptoms and features associated with this developmental disability) as a result of the training (Table 3), representing 21.7% of students' discourse. This was reported even by students with previous personal knowledge about disability, acknowledging that, having a family member with ASD “has allowed me to forget about the spectrum part of the Autism spectrum” [S14].
Students also reported increased knowledge about tools and strategies to use in their future practice (17.2% of students' entire discourse), and almost half of the students discussing this issue (Table 3) mentioned specific strategies they had learned, such as minimizing time spent in the waiting area and having comfort items available in the patient rooms, to show the person with autism what it is going to be done before doing it, or finding out what someone likes and trying to relate to their interests as the best way to build trust. Some students even used these strategies shortly after the training and before completing the survey as reported by [S18]: “This has already led to a change in my behavior: This week, rather than simply walking up to patients with my hand extended to take theirs, I ask, ‘May I shake your hand?' I have begun asking patients, ‘Do you have any concerns about being examined?' before we begin. I have gotten generally positive feedback from patients for doing so.”
A total of 64 students highlighted positive aspects of the training; this topic represented 20.1% of students' entire discourse. The format of the training and having firsthand experiences with people with ASD and their families was mentioned as one of the aspects most valued by students (11.2% of students' discourse, representing 55.7% of the entire discourse dedicated to highlighting positive aspects of the training) not only because of the stories they told, but the way they told it because it “helped make it stick,” as one student stated.
Increased awareness about healthcare barriers faced by people with ASD and their families was the fourth theme most discussed by students (13.8% of students' discourse). Thus, students reported increased knowledge about barriers such as financial burden and lack of appropriate transition services.
Students' reflections also indicated that this training provided them with the opportunity to increase their exposure to developmental disability. This opportunity led students without previous personal knowledge about DD—compared to those with previous personal knowledge—to focus their reflections on the healthcare barriers that people with ASD and their families may experience (50.9% vs. 28.3%; χ2 (1, N = 99) = 5.262; p < .05).
Comparisons based on demographic attributes of participants showed a similar gender effect to that found in the quantitative data. Females were more likely to report in their reflections increased knowledge about tools and strategies to use in a future practice (64.0% vs. 42.9%) and were more likely to mention positive aspects of the training compared to males (74.0% vs. 53.1%).
To the widespread problem of physicians lacking skills and comfort caring for patients with DD, we propose a training solution. Our training provided medical students the opportunity to learn from people with ASD and their families. Panelists shared experiences and touched on topics that might be important to consider when delivering healthcare services to patients with developmental disability. Importantly, the very presence of advocates and family members challenged prevailing and limiting assumptions about disability and reflected the diversity that is autism spectrum disorder.
Following this training, students reported positive or very positive changes in their knowledge, communication skills, confidence, and level of understanding of the challenges faced by people with ASD and their family. When students were given the opportunity to write openly and anonymously about their experience, they reported better understanding of ASD, increased knowledge about tools and strategies to use in their future practice, and increased awareness about healthcare barriers, along with specific and positive comments about the training.
Given these positive findings, we were interested in exploring differences in the effect of the training across student demographic groups. We found significant differences in the learning experience of male versus female students. These differences were found in both quantitative and qualitative data, whereby females were more satisfied than males with the training and were more likely to report a positive change in their communication skills and knowledge about strategies to use in their future practice with patients with developmental disabilities. Other researchers found that females may have greater tendency to imagine themselves in another's place (Hoffman, 1977) and score significantly higher on empathy rating scales (Chen, Lew, Hershman, & Orlander, 2007; Hojat et al., 2002), so they may benefit more from this experience in which they were exposed to medical and personal experiences shared by people with ASD and their families. Previous researchers found that male medical students were more likely to hold negative attitudes toward people with disabilities compared to female medical students, which may also have affected our findings (Paris, 1993; Tervo et al., 2002,). Evidence points to a significant interaction between gender and learning style (Smits et al., 2004), which could also explain the results of this study. Some researchers have pointed out that men show greater preference for traditional educational modalities, whereas women key into the affective aspects of the learning experience and generally have more diverse learning styles (Philbin, Meier, Huffman, & Boverie, 1995; Slater, Lujan, & DiCarlo, 2007). Future medical education research should focus on these variables to maximize positive changes for male and female medical students. For example, educators may discuss prevailing attitudes toward people with disabilities and implicit bias within the medical curriculum and combine direct patient contact with traditional readings and clinical guidelines. Including a control group in future training experiences would improve our understanding of differences between males and females in their willingness to care for patients with ASD.
According to the results of the survey, although not statistically significant, females were more willing than males to work with patients with developmental disability in the future (54% vs. 36.7%). Having previous personal knowledge about disability also increased the willingness of medical students to care for this population. Similar results have been reported by other researchers (McConkey & Truesdale, 2000) and highlight the importance of giving medical students firsthand experiences with diverse populations early in the medical curriculum.
This study has limitations. First, it wasn't possible to evaluate the short- and long-term effects of this educational experience on healthcare professionals, a limitation that is frequently associated with the examination of educational outcomes (Towle et al., 2010). We did not ask students what medical specialty they were planning to pursue, which could influence the perceived benefits of the training. In this sense, Patel and O'Hare (2010) found that pediatric residents were significantly more likely than internal medicine residents to anticipate caring for patients with ASD in the future and also feel significantly more comfortable treating this population. The truth is, however, that people with ASD and other disabilities are not protected from developing a full range of other health conditions and requiring care from healthcare providers in any number of specialty and subspecialty areas. We believe that future health care providers of all disciplines and specialties should have exposure to and develop comfort and competence in caring for patients with disabilities, and that this training should be developed in partnership with the disability community.
Two Surgeon General reports (U.S. Public Health Service, 2002; U.S. Department of Health and Human Services, 2005), one Institute of Medicine Report (2007), the National Council on People with Disabilities Report (2009), and the World Health Organization World Report on Disability (U.N. World Health Organization, 2011) all recommended that we, as a society, improve the knowledge, skills, and attitudes of healthcare providers to improve the care and health of people with disabilities. Although the Liaison Committee for Medical Education (LCME) in the United States emphasizes the value of diversity and providing culturally competent care in its accreditation standards (Liaison Committee on Medical Education, 2015), there is no requirement to include disability in the training of future physicians in the United States. The fact that any student learns about caring for patients with DD is thanks to individual champions within medical schools. If LCME standards were expanded to address the health needs of 20% of the population with disabilities (McNeil, 2001), we could begin to improve health care for children and adults with developmental disabilities.
In conclusion, this relatively brief training had a significant effect on medical students' perceived knowledge, skills, comfort, and confidence in caring for patients with developmental disabilities. Future healthcare providers should learn about disability and have the opportunity to develop knowledge, skills, and attitudes toward disability that will prepare them to provide quality care to this vulnerable population.
The authors wish to express our gratitude to the many adults with autism spectrum disorder and their family members who volunteered their time and shared their stories. We would also like to thank the medical educators and curriculum directors who made time in the curriculum for this training. Finally, we would like to thank the medical students who are our hope for the future of healthcare. This study would not have been possible without support from our funder, the Health Resources and Services Administration Grant# H6MMC22849.