The Autism Friendly Initiative at

Boston Medical Center:

Improving the Hospital
Experience for Patients with
Autism

2019 Autism CARES Meeting

Shari King, MA, MPH
Lauren Bartolotti Busa, MA
Sarabeth Broder-Fingert, MD, MPH
Marilyn Augustyn, MD
Croen L, Zerbo O, Qian Y, et al. The health status of adults on the autism spectrum. Autism. 2015;19(7):814-823.
Liptak GS, Stuart T, Auinger P. Health care utilization and expenditures for children with Autism; data from U.S. national samples. Journal of Autism
and Developmental Disorders. 2006;36:871-879.
1. Vaz I. Improving the management of children with learning disability and autism spectrum disorder when they attend hospital.
Child: Care, Health and Development. 2010;36(6):753-755.
2. Muskat B, Riosa P, Nicholas D, et al. Autism comes to the hospital: The experiences of patients with autism spectrum disorder,
their parents and health-care providers at two Canadian pediatric hospitals. Autism. 2014;19(4):482-490.
National Survey  Parents of children with autism report:
 Higher levels of unmet medical needs
of Children
with  Significant difficulty using services
Special Health  Lack of shared decision making and care
coordination
Care Needs
(NS-CSHCN)  Adverse family impact
  Communication impairments make interaction with
hospital team challenging
 Patients with ASD can become stressed or agitated
when encountering unfamiliar people and environments
 Hyper-sensitivity to auditory, visual, and tactile stimuli
Challenges
Faced by  Patients with ASD may express pain and other physical
Patients with symptoms differently, for example through changes in
behavior such as agitation and aggression- could result
ASD in dangerous or self-injurious behavior
 Clinicians are often not aware that a patient coming in has
ASD, and even if they are aware, the heterogeneity of ASD
necessitates knowledge specific to an individual patients’
needs
 “Sharps
Container.” The lights in
That must here flicker too This squeezes
me too tight
This is
mean I will get much.
a shot! I don’t
and makes a a toy This will
scary noise hurt
I know how to do want a shot!
this. I do it over and
over again. Computer! I can
play on the
I can’t sit still for computer!
I don’t like I feel really
Virtual Tour
very long without
the smell in doing my favorite unstable up This paper
things here makes too
here Paper doesn’t
of an I love to play
with water
much noise belong on a
table

Exam Room I like to open

and close
I need to
inspect this
wire. I love to
Light switch! cabinets
On/off, on/off, spin.
on/off , on/off. . . .
Last time I was in a
This is a really room like this, I like to open
What is in here? I small room. I something bad and close
need to see, and happened. This room things over and
need to leave.
maybe touch or taste it means something bad over
Now. will happen.
The Need
The journey
begins…
 Autism The goal of the Autism Friendly Initiative is to
Friendly improve the overall hospital experience for
patients with ASD.
Initiative
at
Boston Based on valuable input from various sources,
such as patients, stakeholders, literature, and data
Medical analysis, we provide clinicians and staff with the
Center tools, information, and training needed to better
support patients with ASD seen in the healthcare
environment.
 Understand
Challenges

Confirm
through
gathering data

The Process Pilot test

interventions

Measure and
Scale up

Disseminate
Findings
 Focus groups (PLAN)
Needs
Assessment
Hospital-wide staff survey
Engage stakeholders
  “Doctors and especially the people scheduling the
appointments, they need to listen to the parents
needs.
 “The saddest thing about autism is that it’s an
invisible disability. From security, the greeters at
the door, the nurse’s assistant and everything, they
Caregiver should be aware of autism. They should, they’re
working in a hospital, you know.”
Focus Groups
 “That experience was so traumatic that he could
not even drive by. He knows the roads and stuff;
you could not even get close to [hospital]…it’s like
you’re taking him to the gates of hell.”
 “Any parent or patient that’s going though wants to
heard and listened to as a person.
 of Respondents
Not Fully Comfortable
Examining Patients with ASD
"My lack of knowledge on
how to approach the care
for a patient with ASD is
limiting my ability to best
provide services for
him/her."
71% WANT
MORE
TRAINING
 Research
 Autism Friendly Initiative Ethnographic Study
 Independent observers take detailed notes while
following patients with ASD to appointments
 Employs ethnographic methodology to a novel context
 Launching study specific to the ED
Research/
 An Ethnographic Study of Emergency Department
Data Encounters for Patients with ASD
Collection  Experience of Patients with Autism Spectrum Disorder
at Boston Medical Center
 Identify where and when patients with ASD are being seen
here at BMC
 Utilizes a case-matched control group
 Sensory Needs

What
challenges
do
Negative
patients with Patient
autism face? Gaps in
Experience
Communication
Knowledge challenges
 Hospital-
Wide
Steering
Committee
Social Ecological Pieces of the Intervention Measurement/Approach
Model
Individual Autism Support Checklist: collects information about the Studying implementation
patient’s communication, sensory and safety needs and makes and effectiveness
data available through electronic medical record
Healthcare Social Stories App: Provides a preview of the User-tested by families
hospital experience using social stories and populated with associated with the Autism
photographs of Boston Medical Center Program
Interpersonal Sensory Toolbox: contains items including sunglasses, a Quality Improvement
weighted lap pad, for use by clinicians and staff with patients to Methodology- conducting
make for a less stressful experience PDSA cycles
Doctor’s Day: Event at Boston Public School serving ~200
students with ASD to simulate “check-ups” using BU med
students
Organizational Staff/Provider Trainings: Intended to improve knowledge Continuously soliciting
around autism and the needs of our patients, we offer a range feedback through pre-post
of tailored trainings, many of which feature parent panels surveys
Community/Policy and Learning Collaboratives: Partner with other institutions to Collaborations with other
Practice share knowledge institutions
Recommendations Publications and Conferences: Publish and share efforts and
results through journals and conferences
 Autism Care Questionnaire

Name of Patient: ____________________________

Date Completed: _________________

Communication

1. How does the patient communicate information?

Spoken language
Pictures
Written Words
Non-verbal
Electronic Communication
Gestures
Other: ____________________
2. What would help the patient understand information?
Spoken language
Pictures
Written Words
Electronic Communication
Other: ____________________
3. How does the patient communicate pain?
Spoken language
Crying/Screaming
Self Injury
Aggression
Other: ____________________

Autism Support Sensory Needs

4. Does the patient have sensory triggers/needs?

Checklist (ASC) Avoid bright lights

Avoid loud noises
Avoids touch
Seeks pressure
Other: ____________________
5. What items/actions would be helpful?
Sunglasses
Headphones
Stress Ball
Other: ____________________
Interacting with the Patient

6. What would help the patient understand the procedure/exam?

Talk the patient through the exam
Demonstrate on another person
Show a picture schedule
Other: ____________________
7. Are there particular actions or phrases that are likely to trigger the patient?
(e.g. people speaking loudly)
Yes? Please explain:
No
8. Are there behaviors that are likely to need staff assistance?
Bolting
Self-injurious behaviors
Hitting, kicking etc.
Other: ____________________

9. What other information should we know to help make the patient more comfortable?

For any questions or comments on the ACQ, please contact us at autismfriendlyinitiative@bmc.org.

 • Collects information on communication, sensory,
and safety needs
• Conducted by phone by trained staff and interns
• Summarized and entered into patient’s EMR
• Available in English, Spanish, Portuguese, Arabic,
Chinese
Autism Support
 QI Study underway
Checklist (ASC) Implementation of an Autism Support Checklist at
Boston Medical Center: A Pilot Intervention (IRB# H-
38132)
 Determining if the ASC in the EMR is effective at
improving patient experience and quality of care
 Compare high vs. low intensity strategy of informing
clinicians to promote use/solicit behavior change
 ASC
in the
Electronic
Medical
Record
(EMR)
Sensory Toolbox
•Developed in collaboration with the department of Child
Life, informed by input from parents, developmental
behavioral pediatricians, and stakeholder committees

•Available in over 20 varying departments within the

hospital
(ED, pediatrics, dental, psychiatry, security)

•Overseen by Quality Improvement Board

Toolbox
Training
“Virtual Visit”
Social Stories
App  FREE, dynamic, user-informed social stories about
the healthcare encounter
 Real pictures of BMC embedded for tailored use
 Designed to help patients better prepare for
upcoming appointments and medical procedures
with built in reinforcements.
“Virtual Visit”
Social Stories
App
  Presentations feature a parent panel comprised of
members from BMC’s Parent Leadership in Autism
Network (PLAN), who share personal experiences, tips
and strategies for medical providers, in both lecture and
Trainings discussion format.
 Students are also assigned reading on the management
of patients with ASD, published by the American
Academy of Pediatrics.
 Administered pre- and post- class surveys
 Questions formatted either as Likert scale multiple
choice, or as open-ended responses
 Questions included:
 “How familiar are you with techniques for accommodating
patients with ASD?”
 “How comfortable are you communicating with a patient
with ASD?”
Doctor’s Day

 Collaboration with Joseph Lee K-8 Autism Strand

School (Boston Public School)
 Recruited 12 first-year BU Medical Students
 Served ~200 students with ASD ages 3-14
 How much $$
FAQ’s does this take?
Staffing?
FAQ’s Where to begin?
 We’re motivated.
FAQ’s But how do we get
others?
 How do you
demonstrate
FAQ’s change?
Effectiveness?
 What are the
FAQ’s
guidelines?
 Broad engagement of
stakeholders
Patient/family voice
Components Strategic multi-tiered
of ASD interventions
Friendly Real-time
monitoring/evaluation
Commitment to values
 https://youtu.be/UbZMAh5OFTo
 Maternal Child Health
Bureau/Health Resources and
Services Administration
B.U. Center for
Implementation and
Our thanks Improvement Sciences
Organization for Autism
Research

Most of all, our patients and

families
 1. Converging findings show autism prevalence now 1%. Autism Speaks.
Accessed Nov. 6, 2017
https://www.autismspeaks.org/science/science-news/year-autism-
epidemiology

2. Christensen D, Baio J, Braun K et al. Prevalence and characteristics

of autism spectrum disorder among children aged 8 Years — Autism
and Developmental Disabilities Monitoring Network, 11 Sites, United
States, 2012. MMWR Surveillance Summaries. 2016;65(3):1-23.

3. Croen L, Zerbo O, Qian Y, et al. The health status of adults on the

autism spectrum. Autism. 2015;19(7):814-823.

4. Liptak GS, Stuart T, Auinger P. Health care utilization and expenditures

for children with Autism; data from U.S. national samples. Journal of
References Autism and Developmental Disorders. 2006;36:871-879.

5. Croen L, Najjar D, Ray T. A comparison of health care utilization and

costs of children with and without autism spectrum disorders in a large
group-model health plan. Pediatrics. 2006;118,4:1203-1211

6. Liptak GS, Stuart T, Auinger P. Health care utilization and expenditures

for children with Autism; data from U.S. national samples. Journal of
Autism and Developmental Disorders. 2006;36:871-879.

7. Vohra R, Madhavan S, Sambamoorthi U, et al. Access to services,

quality of care, and family impact for children with autism, other
developmental disabilities, and other mental health conditions. Autism.
2014;18(7):815-826.