Autism Friendly Initiative: Research and Publications

Journal Publications

1. Harris, H. Weissman, L., Friedlaender, E., Neumeyer, A., Friedman, A., Spence, S., Rotman, C., Krauss, S., Broder-Fingert, S., Weitzman, C. (2023). Optimizing Care for Autistic Patients in Health Care Settings: A Scoping Review and Call to Action. Academic Pediatrics. 10.1016/j.acap.2023.11.006. 
2. O'Hagan, B., Foster, S., Ursitti, A., Crable, E., Friedman, A., Bartolotti, L., & Krauss, S. (2023). Elucidating the Perspectives of Autistic Youth About Their Health Care Experiences: A Qualitative Study. Journal of Developmental and Behavioral Pediatrics. 10.1097/DBP.0000000000001228 
3. O’Hagan, B., Krauss, S., Friedman., A., Bartolotti, L., Abubakare, O., Broder-Fingert, S., & Augustyn, M. (2022). Identifying Components of Autism Friendly Health Care: An Exploratory Study Using a Modified Delphi Method. Journal of Developmental and Behavioral Pediatrics. 10.1097/DBP.0000000000001139
4. O’Hagan, B., Sonikar, P., Grace, R., Castillo, D., Chen, E., Agrawal, M., Dufresne, S., Rossetti, Z., Bartolotti, L., & Krauss, S. (2022). Youth and Caregivers’ Perspective on Teens Engaged as Mentors (TEAM): An Inclusive Peer Mentoring Program for Autistic Adolescents. Journal of Autism and Developmental Disorders. https://doi.org/10.1007/s10803-022-05543-w
5. King, S. (2019). Making the pediatric practice autism friendly. AudioDigest Pediatrics, 64(24).
6. Rothman, E., Bair-Merritt, M., Broder-Fingert, S., Krauss, S. (2019). The importance of teaching dating skills. The OARacle, February 2019: Healthy Relationships. Published online January 31, 2019. researchautism.org/the-importance-of-teaching-dating-skills-2
7. Broder-Fingert, S., Qin, S., Goupil, J., Rosenberg, J., Augustyn, M., Blum, N., Bennett, A., Weitzman, C., Guevara, J.P., Fenick, A., Silverstein, M., Feinberg, E. (2019). A mixed-methods process evaluation of Family Navigation implementation for autism spectrum disorder. Autism, 23(5), 1288-1299. doi:10.1177/1362361318808460
8. Qin, S., King, S., Broder-Fingert, S. (2018). Factors affecting vaccination in children and their siblings after autism spectrum disorder diagnosis. JAMA Pediatrics, 172(10): 985. doi:10.1001/jamapediatrics.2018.2157

Conference Presentations

1. Friedman, A., Krauss, S., Ferriero, E., Shields, K., McKendry, J., Bastin, S. (2024, September). Building an Autism Friendly Practice annual conference.
2. Campbell, K., McKendry, J., Friedman, A. (June 2024). Autism Friendly Healthcare: Pediatrics and Beyond! Presentation at New England Pediatric Hospital Conference 2024. New Haven, CT.
3. Friedman, A. (June 2024). Creating an Autism Friendly Hospital Environment: The Autism Friendly Initiative at Boston Medical Center. Presentation at the American Association on Intellectual and Developmental Disabilities Annual Meeting 2024. Louisville, KY.
4. Friedman, A. (October 2023). Keynote Panel: Autism and Health Outcomes: How Can We Achieve Healthcare Equity for Individuals with Autism? Presentation at Autism New Jersey Annual Conference 2023, Atlantic City, NJ.
5. Friedman, A., Krauss, S. (October 2023). Perspectives of Autistic Youth about Their Healthcare Experiences. Presentation at Autism New Jersey Annual Conference 2023. Atlantic City, NJ.
6. McKendry, J., Bastin, S. (October 2023). Using Behavior Analysis to Create an Autism Friendly Environment in a Healthcare Setting. Presentation at the Nursing World Conference 2023, Woburn, MA.
7. McKendry, J., Bastin, S. (October 2023). Establishing a Hospital Environment that Supports a Neurodiverse Patient Population. Presentation at Berkshire Association for Behavior Analysis and Therapy Conference 2023, Worcester, MA.
8. Krauss, S. (September 2023). Elucidating the Perspectives of Autistic Youth about Their Healthcare Experiences: Findings From A Qualitative Study. Presentation at the Society for Developmental and Behavioral Pediatrics 2023 Annual Meeting, Minneapolis, MN. 
9. McKendry, J., Bastin, S. (July 2023). Creating an Autism Friendly Hospital Environment. Presentation at the Women in Behavior Analysis Conference 2023, Nashville, TN.
10. Friedman, A., Krauss, S., & Augustyn, M. (April 2023). Elucidating the Perspectives of Autistic Youth about Their Healthcare Experiences: Findings From A Qualitative Study. Presentation at the Pediatric Academic Societies Conference 2023, Washington, DC.
11. Harris, H. K., Weissman, L., Friedman, A. J., Neumeyer, A. M., Friedlaender, E. Y., Spence, S. J., Rotman, C., Krauss, S., Broder-Fingert, S., & Weitzman, C. (April 2023). Improving healthcare experiences of autistic individuals: A scoping review. Poster presented at the International Society for Autism Research Annual Meeting 2023, Stockholm, Sweden.
12. Friedman, A., Dasari, S., & Krauss, S. (March 2023). Elucidating the perspectives of autistic youth about their healthcare experiences: Findings from a qualitative study. Poster presentation at the Academic Pediatric Association Region 1 Annual Meeting 2023, Boston, MA.
13. Friedman, A., O’Hagan B. (2022, October). DBPNet Supporting Access for Everyone (SAFE) Public Forum.
14. Friedman, A., Krauss, S., Bartolotti, L., O’Hagan, B., Ferriero, E., McKendry, J. Bastin, S. (2022, September). Building an Autism Friendly Practice annual conference.
15. McKendry, J., Bastin, S., & Friedman, A. (September 2022). Development and evaluation of behavioral interventions in an applied medical setting. Oral symposium at the Association for Behavior Analysis International Conference 2022, Dublin, Ireland.
16. O’Hagan, B., Ursitti, A., Foster, S., Dufresne, S., Bartolotti, L., & Krauss, S. (May 2022). Experiences of autistic and non-autistic adolescents in a teen mentoring program during COVID-19 pandemic: A qualitative study. Poster presentation at the International Society for Autism Research 2022, Austin, TX.
17. O’Hagan, B., Crable, E., Ursitti, A., Foster, S., Friedman, A., Bartolotti, L., & Krauss, S. (May 2022). Elucidating the perspectives of autistic youth about their healthcare experiences. Poster presentation at the International Society for Autism Research 2022, Austin, TX.
18. O’Hagan, B., Crable, E., Ursitti, A., Foster, S., Friedman, A., Bartolotti, L., & Krauss, S. (April 2022). Elucidating the perspectives of autistic youth about their healthcare experiences. Poster presentation at the Pediatric Academic Societies Conference 2022, Denver, CO.
19. McKendry, J., Bartolotti, L., Ferriero, E. (February 2022). Making your practice autism friendly. Training presentation prepared for Bridgewell: Recovery & Disability Services.
20. Friedman, A., O'Hagan, B., Krauss, S., Bartolotti, L., Abubakare, O., Ferriero, L., & McKendry, J. (2021, September). Building an Autism Friendly practice annual conference.
21. Friedman, A., & Bartolotti, L. (2021, August). Building an Autism Friendly practice. Presented at a training in collaboration with the Association of University Centers on Disabilities.
22. O'Hagan, B., Krauss, S. B., Friedman, A., Bartolotti. L., Abubakare, O., Broder-Fingert, S., & Augustyn, A. (2021, May). Identifying components of Autism Friendly healthcare: A modified Delphi study. Presented virtually at the International Society for Autism Research Annual Meeting 2021.
23. O'Hagan, B., Krauss, S. B., Friedman, A., Bartolotti. L., Abubakare, O., Broder-Fingert, S., & Augustyn, A. (2021, May). Identifying components of Autism Friendly healthcare: A modified Delphi study. Poster presented virtually at the Pediatric Academic Societies 2021.
24. Latif, F., Satti, A., King, S., & Friedman, A. (2021, April). Creating an Autism Friendly hospital environment. Presented virtually at the 29th European Congress of Psychiatry.
25. O’Hagan, B., Sonikar, P., Bricker, E., Friedman, A., Bartolotti, L., & King, S. (2020, October). Barriers in hospital settings for patients with Autism Spectrum Disorder and their families. Presented virtually at the American Public Health Association Annual Meeting and Expo.
26. ​​​​​​Busa, L., King, S., Broder-Fingert, S., & Friedman, A. (2020, September). The Autism Friendly Initiative at Boston Medical Center: Improving the hospital experience for patients with autism. Presented at Tufts Pediatric Grand Rounds.
27. King, S. (2020, September). Building a framework for Autism Friendly. Presented virtually at the first annual Building an Autism Friendly Conference.
28. Busa, L., & Friedman, A. (2020, September). Individualizing care, modifying the clinical environment, and strengthening the system. Presented virtually at the first annual Building an Autism Friendly Conference.
29. Broder-Fingert, S., & O’Hagan, B. (2020, September). Measuring and sustaining impact. Presented virtually at the first annual Building an Autism Friendly Conference.
30. King, S., Friedman, A., & Broder-Fingert, S. (2020, June). Examining the effectiveness of a multimodal ASD training program. Presented virtually at the New England Pediatric Hospitalist Medicine Conference.
31. Friedman, A., O’Hagan, B., Sonikar, P., King, S., Bartolotti, L., & Augustyn, M. (2020). Examining the effectiveness of a multimodal Autism Spectrum Disorder (ASD) training program for medical students. Abstract accepted as a poster at the International Society for Autism Research Annual Meeting (event cancelled due to COVID-19). link
32. O’Hagan, B., Bays-Muchmore, C., Sonikar, P., Huang, C., Qin, S., Friedman, A., Bartolotti, L., King, S., & Augustyn, M. (2020). Healthcare utilization patterns of patients with Autism Spectrum Disorders (ASD). Abstract accepted as a poster at the International Society for Autism Research Annual Meeting (event cancelled due to COVID-19). link
33. O’Hagan, B., Bays-Muchmore, C., Sonikar, P., Friedman, A., Barolotti, L., King, S., & Augustyn, M. (2020). A pilot study examining implementation strategies for the Autism Support Checklist. Abstract accepted as a poster at the International Society for Autism Research Annual Meeting (event cancelled due to COVID-19).
34. Friedman, A., O’Hagan, B., Bartolotti, B., Sonikar, P., King, S., & Augustyn, M. (2020). Examining the effectiveness of a multimodal Autism Spectrum Disorder (ASD) training program for medical students. Abstract accepted as a poster at the 2020 Annual Research Meeting (event cancelled due to COVID-19).
35. Friedman, A., O’Hagan, B., Sonikar, P., King, S., Bartolotti, L., & Augustyn, M. (2020). Examining the effectiveness of a multimodal Autism Spectrum Disorder (ASD) training program for medical students. Abstract accepted as a poster at the Pediatric Academic Societies 2020 Meeting (event cancelled due to COVID-19).
36. O’Hagan, B., Bays-Muchmore, C., Sonikar, P., Friedman, A., Barolotti, L., King, S., & Augustyn, M. (2020). A pilot study examining implementation strategies for the Autism Support Checklist. Abstract accepted as a poster at Pediatric Academic Societies 2020 Meeting (event cancelled due to COVID-19).
37. King, S., Friedman, A., Bartolotti Busa, L., Betancourt, L., Broder-Fingert, S. (2020, March). Building an autism friendly practice. Presented as a a pre-workshop at the annual meeting of the Steven J. Parker Memorial Developmental-Behavioral Pediatric Conference, Boston, MA.
38. King, S., Friedman, A., Bartolotti, L., Broder-Fingert, S. (2020, January). The Autism Friendly Initiative at Boston Medical Center: Improving the hospital experience for patients with autism. Presented at the January 23, 2020 Maine Medical Center Pediatric Grand Rounds, Portland, ME.
39. Bays-Muchmore, C., Tanuwijaya, B., Bartolotti, L., King, S., & Augustyn, M., (2019, December). Testing implementation strategies for the Autism Support Checklist: A pilot study. Presented at the 12th Annual Conference on the Science of Dissemination and Implementation in Health, Washington, DC.
40. O’Hagan, B., Bays-Muchmore, C., Sonikar, P., Huang, C., Qin, S., Friedman, A., Bartolotti, L., King, S., & Augustyn, M. (2019, December). Healthcare utilization patterns of patients with Autism Spectrum Disorders (ASD). Poster presented at the 8th annual Clinical and Translational Science Institute (CTSI) Translational Science Symposium, Boston, MA.
41. O’Hagan, B., Bays-Muchmore, C., Friedman, A., Bartolotti, L., King, S., & Augustyn, M. (2019, November). Implementation of an Autism Support Checklist (ASC) at Boston Medical Center: A pilot intervention. Poster presented at the 6th Quality and Patient Safety Week at Boston Medical Center, Boston, MA. *Winner of the 2019 Quality and Patient Safety Award
42. Dufresne, S. & Mader, N. (2019, November). Autism Spectrum Disorder and employment: A webinar for Pre-ETS providers. Presented by The Autism Program at Boston Medical Center & the Federation for Children with Special Needs.
43. Ramos, C., Dufresne, S., & Rubin, D. (2019, November). Is it ever just autism: Comorbidities and resources for transitional age youth. Presented at the November 7, 2019 Boston Medical Center Department of Psychiatry Grand Rounds, Boston, MA.
44. King, S., Busa, L. B., Broder-Fingert, S., & Augustyn, M. (2019, July). The Autism Friendly Initiative at Boston Medical Center: Improving the hospital experience for patients with autism. Presented at the 2019 Autism Cares Meeting, Washington, DC.
45. Broder-Fingert, S., King, S., & Busa, L. B. (July, 2019). The evolution of an Autism Friendly hospital. Presented at the 2019 Pediatric Hospitalist Conference, Seattle, WA.
46. Goupil, J., King, S., Bartolotti Busa, L.,Qin, S., Cahill, D., Park, S., Broder-Fingert, S., Augustyn, M. (2019, April). An ethnographic study of the experience of patients with autism spectrum disorder during outpatient encounters. Presented at the annual meeting of the Pediatric Academic Societies, Baltimore, MD.
47. King, S., Qin, S. (Chairs). (2019, April). Challenges to caring for children with autism in inpatient/hospitalist, outpatient, and emergency care settings. Panel presented at the annual meeting of the Pediatric Academic Societies, Baltimore, MD.
48. Qin, S. (2019, April). Implementation of techniques and approaches to improving the experience of care for patients with autism in a safety net hospital. Presented at the annual meeting of the Pediatric Academic Societies, Baltimore, MD.
49. King, S. (2019, April). Moderator of session and Q&A of: Techniques and approaches to improving the experience of care for patients with autism. Presented at the annual meeting of the Pediatric Academic Societies, Baltimore, MD.
50. Busa, L., Ferriero, E., King, S., Augustyn, M., Clark, A., Qin, S. (2018, May). Preparing medical students to interact with patients with autism spectrum disorders (ASD) and their caregivers. Presented at the 13th meeting of the BUMC McCahan Education Day. *Winner of the Best Staff Abstract - Education Innovation & Research award.
51. Ferriero, E. & Bartolotti Busa, L. (2018, May). Understanding autism and related services. Presented at the annual meeting of the Massachusetts Early Intervention Consortuim Conference, Framingham, MA.
52. Qin, S., King, S., Busa, L., Goupil, J., Cahill, D., Broder-Fingert, S., Augustyn, M. (2018, May). Boston Medical Center Autism Friendly Initiative: Improving hospital experience for patients with autism. Poster presented at the annual meeting of the Pediatric Academic Societies, Toronto, Canada.
53. Qin, S., King, S., Busa, L., Goupil, J., Cahill, D., Broder-Fingert, S., Augustyn, M. (2018, April). Boston Medical Center Autism Friendly Initiative: Improving hospital experience for patients with autism. Poster presented at the 1st annual meeting of the BUMC Health Equity Symposium, Boston, MA.
54. Dufresne, S. & Cardoso, P. (2018, April). The Autism Program at Boston Medical Center. Presented at the 2nd annual meeting of the Boston Medical Center Patient Navigator, Care Coordinator and Community Health Worker Symposium, Boston, MA.
55. Dufresne, S. (2018, March). Transition age youth with developmental disabilities: Tips to help smooth the ride. Presented at the 34th annual meeting of the Steven J. Parker Memorial Developmental-Behavioral Pediatric Conference, Boston, MA.
56. King, S., Qin, S. (2018, March). Making your practice autism friendly. Presented at the 34th annual meeting of the Steven J. Parker Memorial Developmental-Behavioral Pediatric Conference, Boston, MA.
57. Fortuna, L. R., Augustyn, M., Rubin, D., Bartolotti, L., Coles, M., Costello, E., Diehl, R., Douglass, L., Dufresne, S., Fernandez-Pastrana, I., Hoffman, J., King, S., Maypole, J., Morales, L., Morera, C., Porche, M. V., Spencer, A., Steiner, N., Valentine, S., Wenger, J. (2017). All grown up, the many faces of autism: A developmental approach to behavioral health care for the transition age youth diagnosed with autism spectrum disorder (and intellectual disabilities). [Curriculum]. Boston, MA: Boston Medical Center & Boston University.
58. Radesky, J. & King, S. (2017, October). Autism spectrum disorder and digital media. Presented at the annual meeting of the Society for Developmental & Behavioral Pediatrics, Cleveland, OH.
59. King, S., Bartolotti, L., Dufresne, S., Ferriero, E., & Rajabiun, S. (2017, May). Teens Engaged as Mentors (TEAM): An evaluative study of program impact. Poster presented at the 14th annual meeting of the International Meeting for Autism Research (Annual Meeting of the International Society for Autism Research), San Francisco, CA. link
60. Dufresne, S. & Cardoso, P. (2016, December). The Autism Program at Boston Medical Center. Poster presented at the 1st annual meeting of the Boston Medical Center Patient Navigator, Care Coordinator and Community Health Worker Symposium, Boston, MA.
61. King, S., Bartolotti, L., & Ferriero, E. (2016, December). Navigating Autism Spectrum Disorder: An innovative culturally diverse parent support model. Presented at the annual meeting of the Zero to Three Conference, New Orleans, LA.
62. King, S., Bartolotti, L., Ferriero, E., Gomes, E., Pignataro, L., Tanzman, I., Dantowitz, F. (2016, May). Navigating Autism Spectrum Disorder and family empowerment. Presented at the annual meeting of the Massachusetts Early Intervention Consortuim Conference, Framingham, MA.
63. Gabovitch, E., Bartolotti, L., Bentley, B. M., Blenner, S., Braden, K., Charles, J., Choueiri, R., Fernández-Pastrana, I., Gomez, A., Helm, D., Hunt, A., King, S., Maslin, M., Prudent, N., Travers, J., Willis, L. (2014, November). Considering culture in autism screening: A cultural & linguistic competence training curriculum for pediatric providers. Poster presented at the annual meeting of the Association of University Centers on Disabilities (AUCD) Conference, Washington, D.C.
64. King, S. (2014, March). Understanding and supporting your child with Autism. Presented at the annual meeting of the Visions of Community Conference, Federation for Children with Special Needs, Boston, MA.
65. King, S., Bartolotti, L. (2013, March). After the diagnosis: Supporting families affected by ASD across medical settings. Presented at the 29th annual meeting of the Steven J. Parker Memorial Developmental-Behavioral Pediatric Conference, Cambridge, MA.
66. King, S. & Hironaka, L. (2011, April). Difficult conversations pre/post diagnosis of ASD. Presented at the Boston University Pediatric Primary Care CME, Waltham, MA.
67. King, S. (2009, March). Autism: Frequently asked questions of primary health care providers. Presented at the 25th annual meeting of the Steven J. Parker Memorial Developmental-Behavioral Pediatric Conference, Cambridge, MA.

Research Studies

The Autism Friendly Initiative oversees many research studies. Click below to learn more!

Ethnographic Study of the Experience of Patients with Autism Spectrum Disorder (ASD) during Outpatient Encounters [Completed!]

Aim: To identify and describe barriers and facilitators to care for patients with ASD when receiving outpatient treatment in a hospital setting.
Methods: We used ethnographic methods to understand the experiences of patients with ASD and their families. Researchers followed 23 patients and their families for the duration of their outpatient visit to Boston Medical Center, an urban safety-net hospital. All patients had a documented ASD diagnosis and were attending a regularly scheduled outpatient appointment. Extensive ethnographic field notes were taken to capture all relevant features of medical visits and transcripts of these notes were coded to identify key themes and recurring patterns during patient visits.

Results: There were 752 occurrences of barriers to care across all transcripts, representing 85 unique events or interactions. Barriers to care were distributed relatively evenly across thematic categories of Patient Behavior (29.4%), Other Hospital Factors (28.2%), Environment (27.1%), and Communication (15.3%). A majority of barriers to care occurred in the exam room (55.3%), with the distraction of caregivers or providers due to patient behavior representing a major issue (11.8% of cases). In addition to these barriers to care, 45 unique events or interactions were identified as facilitators. Most facilitators were related to Communication (42.2%) and Environment (36.4%) rather than Patient Behavior (4.4%) or Other Hospital Factors (4.4%). Like barriers, most facilitators were identified in the exam room (46.7%), with the bulk of facilitating events being patient-directed communication (28.9%) and direct caregiver participation (17.8%), including caregiver input on specific needs related to ASD (4.4%). 

Conclusion: These results suggest that the barriers to care for children with autism are diverse, spanning patient behavior, the hospital environment, communication between families and providers, and other hospital factors such as long wait times. To address these barriers, hospitals may want to focus on enhancing facilitators of care such as a sensory-friendly environment with age-appropriate toys and provider training that emphasizes patient-directed communication and attention to specific ASD-related needs. We hope that further discussion of these results will inform best practices for the outpatient treatment of individuals with ASD and guide future research in the area. 

Patient Data Study [Completed!]

Aim: To examine utilization patterns of ASD patients at Boston Medical Center (BMC). 

Methods: We examined data from BMC patient data warehouse. We included 1,787 unique pediatric (≤22 years old) and 304 unique adult (≥23 years old) patients, who were flagged with ASD diagnosis on their active problem list using ICD-9 and ICD-10 codes and seen at BMC in 2017. We used descriptive statistics to analyze utilization patterns by department.

Results: 1,787 pediatric patients generated 8,000 encounters (92% outpatient, 6% emergency, 1% inpatient, 2% other) and 304 adult patients generated 1,953 encounters (86% outpatient, 10% emergency, 2% inpatient, 2% other) in 2017. For all patients, the Emergency Department (ED) was one of the most visited departments (#4 for pediatric and #2 for adult patients). 
In the ED, 317 ASD pediatric patients (507 encounters) and 74 ASD adult patients (185 encounters) were seen in 2017. 70 (24.5%) of those pediatric patient encounters were generated due to a reported behavioral crises, making it the most common reason for ED encounters. For adult patients, this number is 18 (17%), making it the second most common reason after body aches/heart problems.

Conclusion: ASD patients are regularly seen throughout BMC, suggesting that there is a need for hospital-wide strategies to improve their experiences. The number of adult patients is disproportionately low, which may be due to underdiagnosis or underreporting of ASD in adults. Behavioral crises were among the most common reasons for ED encounters, suggesting a need for additional staff training to address behavioral health needs within the ASD community.

Autism Support Checklist (ASC) Study [Completed!]

Aim: The goal of this study is to (1) evaluate two implementation strategies (i.e., high-intensity and low-intensity trainings), (2) determine the acceptability of the ASC, and (3) collect patients’ caregivers’ feedback. 

Methods: We looked for upcoming appointments for patients who had ASCs in their EHR and randomly assigned their clinicians (n = 23) to one of two groups; (1) low intensity group (received an email about ASC) and (2) high intensity group (received an email and in-person training about ASC). After the appointment, clinicians completed a brief online survey. We also collected data from 17 patient caregivers through a phone survey after their appointments. Both clinician and caregiver surveys included quantitative and qualitative items. Responses were analyzed using Fisher’s exact tests. 

Results: 71% of clinicians reported reading the ASC in full and among these clinicians, 70% reported finding it useful. In terms of potential barriers to ASC, 43% of clinicians reported “lack of time”, 14% reported “information is irrelevant”, 14% reported “information is too long”, and 17% reported “unsure where to locate”. 18% of clinicians reported changing their behavior because of the ASC. There is a trend in which high-intensity group clinicians were more likely than low-intensity group clinicians to report reading the ASC in full (p = 0.068) and  lack of time as a potential barrier for using the ASC (p = 0.10). There was no significant difference between the responses of the clinicians in the high-intensity group and the low-intensity group. Patient caregivers reported similarly positive outcomes across both clinician groups regarding clinicians’ ability to communicate with the patient and address their sensory needs.

Conclusion: In this pilot study,  the ASC was generally well-received by clinicians, and there is preliminary evidence suggesting that an active training component may be helpful in increasing clinician engagement, it does not translate to an increased likelihood that the clinician will rate the ASC as more helpful or report behavior change. Further research is needed to explore other potential implementation strategies for the ASC and its longitudinal impact and effectiveness on improving care delivery and patient/family-related outcomes.

Table 1 - Results from the post-appointment clinician survey. Data were analyzed using Fisher’s exact test. Significance was considered to be at p < 0.05. 

Table 2 - Results from the post-appointment patient caregiver survey. Data were analyzed using Fisher’s exact test. Significance was considered to be at p < 0.05.    

Delphi Study [Completed!]

Methods: After gathering the stakeholders’ scoring, the potential statements that were scored low (bottom 50%) by all stakeholder groups were eliminated. In the second round, participants were allowed to “rescue” eliminated statements from the first round. Any statements with low scores by all stakeholder groups were eliminated. In the third round, 10 statements were selected as priorities by participants ranking the 16 remaining statements according to level of importance.

Results: The top 10 statements listed from highest to lowest importance: (1) flexibility of practice to accommodate patient needs; (2) patients with autism are addressed directly and included in health care decisions; (3) staff are notified of a patient's ASD diagnosis, communication style, triggers, safety concerns, and de-escalation strategies prior to encounter; (4) allow for modifications to the physical space according to patient preferences; (5) navigation support and staff to connect specialty medical, educational, and community services or supports; (6) staff trained on understanding challenging behavior and de-escalation approaches that prioritize noninvasive techniques; (7) assigning longer appointment slots for patients with autism who need them; (8) engaging multidisciplinary stakeholders to guide and oversee efforts to improve the hospital experience for patients with autism and their families; (9) prepared staff who accommodate individual communication styles; (10) preferential scheduling of appointment times when available. 

Conclusion: Highly ranked statements aligned with reported barriers in previous studies. These findings demonstrate the importance of involving all stakeholder groups to create a more diverse and inclusive healthcare experience for autistic individuals and their families. Further studies are needed to examine the similarities and differences among the perspectives of stakeholder groups and recruit a more representative sample population of nonprofessional family members and autistic individuals.

Autism 101 Study

Aim: To increase self-reported familiarity with: ASD, techniques for accommodating patients, comfort examining patients, and communicating with patients.
 
Methods: 205 third-year medical students participated in monthly “Autism 101” trainings throughout 2018-2019, which includes a parent panel that provides critical insight into patient and family experiences. Topics covered include definition, presentations, and associated diagnostic criteria of ASD; barriers faced by patients with ASD and families in the hospital; and strategies to facilitate interactions with patients with ASD. Medical students were asked to complete a pre-training and post-training survey, consisting of quantitative and qualitative items. The survey was developed to assess the training objectives, by asking students to rate statements on a 5-point Likert Scale (1 = not at all familiar/comfortable, 5 = very familiar/comfortable) on all four aims: familiarity with ASD, techniques for accommodating patients, comfort with exam, and comfort with communication. 
 
Results: An independent-samples t-test was conducted to compare students’ familiarity with ASD, techniques for accommodating patients, comfort-level in examining patients, and communicating with patients with ASD. There were statistically significant differences in responses to all four survey items before and after the training (Table 1). In addition, medical students also provided positive qualitative feedback for the training, such as “[this training] is an invaluable resource…as we prepare to be the individuals on the other side of the bed caring for patients and their families”, and requested that the training be kept “every year” for medical students. 
 
Conclusions: Medical students found the “Autism 101” training helpful in improving their familiarity and comfort-level with ASD. Integration of ASD education and training into general medical student curriculum nationwide may be beneficial. More research is needed to further evaluate how their familiarity and comfort impacts future behavior.

Table 1 - Responses from the pre- and post-training medical student surveys (n = 205). Data were analyzed using independent samples T-test. Significance was considered to be at p < 0.05.

Doctor’s Day Study

Aim: to study the effectiveness of the experiential training in improving medical students’ knowledge and subjective comfort-level in caring for patients with ASD
Methods: mixed methods consisting of quantitative surveys and qualitative interviews and focus groups. 

Every year in April, we collaborate with Boston University School of Medicine (BUSM) and the Joseph Lee School (an autism strand school from Boston Public Schools). BUSM students volunteer their time to help students with ASD ages 3-14 to go through simulated check-ups (e.g., height and weight measurement, blood pressure, ear check, etc.) to prepare them for real medical visits., we use a mix of quantitative and qualitative measures. First, we conduct a focus group with parents of the Joseph Lee School students to understand their children’s needs and their experiences with providers. Next, we provide a regular lecture-based training with a parent panel to BUSM students, during which we provide pre- and post-surveys. Then, we conduct Doctor’s Day and provided BUSM students with another survey to see whether there is any change in gains in knowledge and comfort between a lecture-based and an experiential training. Finally, we follow up with BUSM students to interview them to gain a more in-depth understanding about their experiences and how we can further improve the Doctor’s Day event for the following year. We also survey the Joseph Lee School teachers after Doctor’s Day to ask about their experiences with the event and gather feedback for future improvements. 

Everyday Applied Behavior Analysis (ABA) Study

Aim: to examine the effectiveness of a 6-part parent and caregiver training in improving participants’ knowledge and comfort-level in applying Applied Behavioral Analysis (ABA) strategies

Methods: post-survey after the training series 

Applied Behavior Analysis (ABA) is considered to be current “gold standard” of ASD treatment. In essence, ABA involves analyzing an individual’s behavior in an attempt to encourage positive behaviors using positive reinforcements (e.g., putting on jacket before going outside  gets a sticker). This technique is used to teach individuals with ASD a wide variety of skills (e.g., classroom routines, reading, tooth brushing, etc.). For the most part, ABA is covered by insurance, which is why it is in very high demand, leading to waitlists that can last for months or even up to a year. To help address this gap in services, each year, we conduct two rounds of Everyday ABA, a 6-part parent/caregiver training in ABA for free. Therefore, parents/caregivers whose children are still waiting to receive ABA services can learn about it themselves and potentially start practicing some ABA strategies at home.

Sensory Toolbox Study

Aim: to examine the user satisfaction, effectiveness, and implementation of the Sensory Toolbox in helping patients with autism complete their visits. 

Methods: In collaboration with our Quality Improvement Board, we are in the process of developing and implementing a short survey for clinicians and parents who use the Sensory Toolbox in the Developmental Behavioral Pediatrics clinic at Boston Medical Center. 

Many thanks to our esteemed Research Partners…

The Constance Putnam Foundation