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Individuals with disabilities experience significant health disparities. People with developmental disabilities have difficulty accessing medical care especially for preventive and chronic conditions. This segment of our population is living longer, fuller lives and it is paramount to adapt current medical tools and strategies to meet their diverse healthcare needs. Lack of formal training about developmental disabilities leads to decreased comfort and competence of medical professionals, creating barriers to optimal care. A variety of medical education approaches can be applied in a deliberate systematic fashion to address these issues.

Program Objectives

Curricular elements that include patients with autism spectrum disorder or other disabilities can support LCME goals of cultural competence, diversity, or meeting the needs of underserved populations. Consider including the following objectives in your undergraduate medical education curriculum:

  • Teach medical students how to care for patients with autism spectrum disorders and other developmental disabilities
  • Improve students’ understanding of and competence in providing family-centered care to underserved patients
  • Improve medical students’ attitudes and knowledge of persons from diverse cultural backgrounds including disability.
  • Increase the number of physicians with skills and attitudes that welcome persons with disabilities into their practice
  • Empower individuals with developmental disabilities to become advocates for their own care
Step-by-Step Guide to Teaching Medical Students to Care for Patients with Autism Spectrum Disorders

Medical education programs are increasingly expected to address underserved or vulnerable populations and teach medical students to be culturally competent. Including content on patients with disabilities can address these curricular elements. A critically important element of teaching patient care to vulnerable populations is giving students hands-on experience with the underserved population, in our case people with autism spectrum disorders (ASD). This guide provides sample objectives that can be met with such an encounter, a list of types of encounters that can be arranged and specific suggestions on how to recruit volunteers for your encounter. You can download this step-by-step guide in its entirety here.

Create objectives for encounter

Curricular elements that include patients with autism spectrum disorders or other disabilities can support the Liaison Committee on Medical Education (LCME) goals of cultural competence, diversity, or meeting the needs of underserved/vulnerable populations. Consider including one or more of the following objectives in your undergraduate medical education curriculum:

  1. Teach medical students how to care for patients with autism spectrum disorders and other developmental disabilities.
  2. Improve students’ understanding of and competence in providing family-centered care to underserved patients.
  3. Improve medical students’ attitudes and knowledge of persons from diverse cultural backgrounds including disability.
  4. Increase the number of physicians with skills and attitudes that welcome persons with disabilities into their practices.
  5. Empower individuals with developmental disabilities to become advocates for their own care.

Choose type of encounter or combination of encounters

Undergraduate medical programs address diversity in a variety of ways: didactic instruction, community service encounters, clinical clerkships, standardized patient (SP) encounters, panel discussions with patients, advocates, and family members; in addition to home visits where students interact with individuals with disabilities outside of a healthcare setting.

Didactic

Lectures can be an efficient way to teach students about health and healthcare disparities, diversity, and patient care issues. Incorporating video content that features people with disabilities and their families can make lectures more engaging and impactful. Online didactic material is available and examples can supplement hands-on patient encounters. Click here for “Healthcare Access for Persons with Developmental Disabilities,” a one-hour training on health issues and barriers to health care for people with developmental disabilities (including intellectual disability, autism spectrum disorder, and cerebral palsy).

The Centers for Disease Control and Prevention’s Learn the Signs. ACT Early materials help healthcare professionals gain knowledge and skills to improve early identification, diagnosis and care of children with ASD.

In 2005 University of South Florida clinical educators implemented a disability-related course for all third-year medical students. This six-week course incorporates didactic instruction, training sessions, and clinical experiences during the primary care clerkship (Woodard, Havercamp, Zwygart, & Perkins, 2012).

Symons, McGuigan, and Akl (2009) at the University of Buffalo School of Medicine and Biomedical Sciences developed a four-year curriculum to educate medical students about disabilities. The curriculum uses several approaches such as classroom instruction, home visits and clinical experience to achieve three overarching goals: build knowledge of disabilities, improve attitudes and commitment to disability, and foster skills to provide patient-centered care.

Estimated time for encounter: 60 mintues

Standardized Patient

Including patients with disabilities in standardized patient (SP) encounters is an effective way to provide training on vulnerable populations including autism spectrum disorders (ASD) and other disabilities. Standardized patients are individuals who are specifically trained to participate in mock doctor-patient encounters. SPs are trained to recreate physical, emotional, and medical history and responses of an actual patient. These activities can improve students’ interpersonal communication skills, which are the cornerstone in patient interviewing. For SPs with disabilities, the encounter could be simply a “new patient exam”; this may be easier for volunteers with cognitive impairment that might interfere with their ability to memorize and act-out a case.
Clinical educators at the University of South Carolina created a ninety-minute workshop for third-year medical students to improve skills, awareness and clinical consideration of patients with disabilities. Persons with disabilities are used as standardized patients for this interaction (Brown, Graham, Richeson, Wu, & McDermott, 2010). Medical students are taught how to safely transfer patients from their wheelchairs to examination tables. Students are required to complete a fifteen-minute visit with a patient who has a disability including physical exam. Tufts University School of Medicine introduces medical students to the “Chris Walker case” during their third-year clerkship in Family Medicine. This case uses individuals with physical disabilities and/or blindness to portray a patient with shoulder discomfort. Students are required to perform a patient interview including medical and social history (Minihan et al., 2004).
The Ohio State University Nisonger Center, with funding from the Health Resources and Service Administration, implemented a curriculum to train third-year medical students to care for patients with autism spectrum disorders. This encounter took place during the ambulatory care clerkship and we worked closely with the Director of Ambulatory Clerkships in the College of Medicine to facilitate these encounters. One element of this innovative curriculum involved training adults with ASD to function as standardized patients in a mock interview scenario with medical students. We used this presentation to introduce adults with ASD to the standardized patient program. During each rotation, two adults with ASD were interviewed by medical students, who were encouraged to build rapport and establish a relationship with the SP in a “new patient” scenario. The clinical scenario entailed an interview, medical history, but no physical exam at the request of several volunteers with ASD. Following each encounter, we conducted a facilitated small-group discussion. Finally, students were asked to write a reflection on what they learned and the relevance of the experience to their practice as a physician.
Estimated time for encounter: 90 mintues

Clinical Clerkship

Students at Rutgers University Robert Wood Johnson School of Medicine visit Matheny Medical and Educational Center during their third year to learn how to interact and care for individuals with disabilities as a part of their clerkship rotation. Additionally, third-year medical students take part in a developmental disability seminar during their pediatric rotation facilitated by The Elizabeth M. Boggs Center on Developmental Disabilities.

The School of Medicine at the University of Massachusetts offers an interclerkship for third-year medical students entitled “Working with Persons with Disabilities in the Clinical Setting,” and a Population Health Clerkship for second-year medical and nursing students focused on the healthcare needs of individuals with disabilities.

Estimated time for encounter: four hours

Panel Discussion

Panels can be an effective way to expose students to a number of patient care issues from the patient or family perspective. Participants can be individuals with disabilities, parents, family members, advocates, and medical professionals. The role of the facilitator is to create a dialogue that is both informative and engaging.*

*Note: Because panel discussions are not scripted, panel members may surprise the class and moderator with what they share. For example, it is not uncommon for families with children with autism spectrum disorder to explore Complementary or Alternative Medicine. This presents an opportunity for the faculty member to discuss with the students how to respond to the family who expresses interest in treatments that are not evidence-based. This dicussion should be held before or after the panel presentation.

Ideas for panel discussion:

  • Impact of diagnosis
  • Misconceptions and stigmas associated with diagnosis
  • Acute healthcare experiences
  • Best experience with medical professional
  • Worst experience with medical professional
  • Medications, therapy, community services
  • Transition to adult services
  • Educational services
  • Caregiver wellness
  • Community resources for patients and families
  • Healthcare financing, cost of services

The Ohio State University Nisonger Center facilitates panel discussions on the healthcare needs of children and adults with ASD. Our panels consist of a facilitator (a developmental-behavioral pediatrician) and 4-6 panel members made up of people with ASD, parents and other family members. Although previous panel participants with ASD were able to speak and respond to questions, the parents were able to offer a glimpse into life with children who are severely affected by ASD. We also added two videotaped physical exams of patients with ASD performed by a developmental-behavioral pediatrician. These exams were used to demonstrate the effectiveness of interpersonal communication, person-first language, and the benefits of a medical home approach to primary care.

Estimated time for encounter: 90 mintues

Home Visits

Home visits can have a profound impact on students and are effectively used by clinician educators to teach medical students continuity of care. Home visits have been used as part of geriatric clerkships to educate students on the psychosocial components of chronic illness and to improve attitudes toward vulnerable populations.

Mount Sinai Visiting Doctors Program is the largest academic-based home visit program in the nation. Third-year medical students take part in a one-week, home-based clinical rotation in the Visiting Doctors Program. Students conduct physical examinations and assessments, focusing closely on social and cultural determinants of health within the home environment (Ornstein, Hernandez, DeCherrie, & Soriano, 2011). Students at Weill Cornell Medical College participate in a half-day home visit experience as a part of their third-year primary care clerkship, where they learn the art of psychosocial histories and chronic illness care management. University of Connecticut medical students participate in a home care and health assessment program as part of their second-year experience.

Estimated time for encounter: two hours

Community Service

Florida International University Herbert Wertheim College of Medicine has an innovative service-learning program through its community outreach initiative, NeighborhoodHELP. This program is considered the cornerstone of students’ medical education at Florida International University. During students’ second year they take part in their service-learning study, which includes a home visit component. Using interdisciplinary teams from public health, social work, nursing, and law, students monitor and track the health of families. Additionally, students will work with community partners and primary care physicians to develop and implement care plans for families throughout their matriculation.

Estimated time for encounter: varies

Educational Resources

The University of California-San Francisco has created a program within The Department of Family and Community Health with the goal of improving health outcomes for individuals with developmental disabilities across the lifespan. The Office of Developmental Primary Care offers clinical services, advocacy, research and training opportunities. Their website offers a wealth of resources for self-advocates, clinicians, researchers, and trainees.

Contact your local autism organizations and community support groups – they may be very interested in helping you find individuals and families willing to help teach medical students about autism. Also, speak with colleagues within your organization and community who care for patients with developmental disabilities – they may know resources and families in the autism community. For more information about such organizations, please see the statewide and nationwide resource lists.

Correspond with volunteers regularly to improve attendance

We contact volunteers initially in person or by phone and follow up by email. Here is a series of communications in email form that you can use to help panel attendance. We have inclued these correspondences as downloadable documents, which can be edited to fit program needs.

Sample Panel Email Correspondence
6 weeks before panel
Email 1: Recruitment

Greetings, (Insert name),

I hope this note finds you well. It was a pleasure meeting you at the Autism Society event. I am writing to tell you about a new project being implemented at our center. The (Insert Center name) at (Insert University name) is hosting a panel entitled, Educating Medical Students about Autism Spectrum Disorder (ASD).  This will take place on (Insert date and time). The overarching goal of this panel is to improve medical students’ attitudes and knowledge of persons with disabilities and to increase the number of physicians providing services to individuals with intellectual and developmental disabilities (IDDs). We want to provide educational opportunities to build competence and understanding in caring for patients with ASD for medical students. Our objective is three-fold: to give medical students essential information about providing care to individuals with ASD, to empower persons with disabilities to become advocates for their health care, and to improve patient transition from pediatric to adult medical care services.

Please let me know whether or not you are interested and available to participate in this panel on (Insert date and time).  I will follow up with a phone call next week.  In the meantime, please reply to this email or call me at (your telephone number).  I look forward to talking with you about this opportunity! Your participation will help in the improvement of medical education for future health care in the treatment of autism spectrum disorders.

Frequently Asked Questions

How do I find the time in the curriculum to address autism spectrum disorder?

  • One strategy is to incorporate content into an existing compatible rotation. Some examples include ambulatory or primary care-based rotations such as pediatrics, family medicine, internal medicine.
  • Use technology to save time. For example, have students review learning materials on their own and come to class prepared to discuss. Post a lecture online, perhaps even with discussion or self-evaluation questions.
  • Look for ways to include autism and other developmental disabilities in discussions, sessions or rotations dealing with underserved populations, health disparities, diversity or other compatible topics.
  • Another strategy is to embed teaching about autism and other developmental disabilities throughout the curriculum. For instance, mentioning the increased risk of seizures in patients with autism during a session on seizures, then discussing autism, including aspects of care such as how to get EEGs in patients with autism. While this is more “inclusive”, something we would like to promote, this obviously requires more coordination with the faculty and with the curriculum planning committee.

I’d like to use individuals with autism and/or family members for panels or standardized patient experiences but don’t know how to recruit them. Help!

  • Local organizations such as Autism Society are a great place to start. See the Resources guides on this site for ideas.
  • Also talk with professionals at your organization or in the community who work with individuals with autism. They probably know families and patients who would be interested.
  • We held a reception for individuals and families who were interested in being standardized patients. Part of the purpose was to give them information about our activity; it also allowed us to meet the individuals and assess how they would work in our setting and what we might need to do to make their participation successful. Some volunteers talked too much (i.e., the student interviewers might need help focusing the interview), while others not much at all, making it hard to get information from them.

We don’t have funding to set this up. How do we get started and maintain it?

  • Make these activities part of a broader program, perhaps a medical student rotation you already participate in. Use support staff you already have to assist with scheduling, organization, etc.
  • Use trainees, such as fellows, if available. The fellows gain teaching and administrative experience. Student workers or volunteers also may be able to help with some of the logistical aspects.

What objectives does this meet?

  • Curricular elements that include patients with autism spectrum disorder or other disabilities can support the Liaison Committee on Medical Education (LCME) goals of cultural competence, diversity, or meeting the needs of underserved/vulnerable populations. Consider including one or more of the following objectives in your undergraduate medical education curriculum:
    1. Teach medical students how to care for patients with autism spectrum disorders and other developmental disabilities.
    2. Improve students’ understanding of and competence in providing family-centered care to underserved patients.
    3. Improve medical students’ attitudes and knowledge of persons from diverse cultural backgrounds including disability.
    4. Increase the number of physicians with skills and attitudes that welcome persons with disabilities into their practices.
    5. Empower individuals with developmental disabilities to become advocates for their own care.