J Autism Dev Disord
DOI 10.1007/s10803-017-3040-5
BRIEF REPORT
Brief Report: Meeting the Needs of Medically Hospitalized Adults
with Autism: A Provider and Patient Toolkit
Jocelyn Carter1 · Sarabeth Broder‑Fingert2 · Ann Neumeyer3 · Ann Giauque3 ·
Ann Kao4 · Christiana Iyasere5 
© Springer Science+Business Media New York 2017
Abstract  In an effort to meet the needs of adults with
autism spectrum disorder (ASD) while hospitalized, a
team of experts and providers from Massachusetts General
Hospital (MGH), MGH for Children as well as parents of
individuals with ASD was sparked in 2013. This became
a multidisciplinary collaborative, the MGH Autism Care
Collaborative, to improve adult care for inpatients with
ASD. The collaborative was created with three goals in
mind: (1) to educate internal medicine adult inpatient pro-
viders and staff on the unique needs of adults with ASD
when hospitalized; (2) to create ASD specific resources for
internal medicine adult inpatient providers; (3) to optimize
patient care from admission to discharge among adults with
ASD admitted to internal medicine services.
Keywords  Autism · ASD · Inpatient · Hospitalization ·
Autism educational tools
* Jocelyn Carter
jcarter0@partners.org
1
Clinician Educator, Department of Medicine, Massachusetts
General Hospital, 55 Fruit Street, Bulfinch 015, Boston,
MA 02114, USA
2
Pediatric Internist, Department of Pediatrics, Boston Medical
Center, 850 Harrison Ave, 5th Floor, Boston, MA 02118,
USA
3
Administrative Director, Lurie Center for Autism,
MassGeneral Hospital for Children, 1 Maguire Road,
Lexington, MA 02421, USA
4
Pediatric/Internal Medicine Clinician Educator, Department
of Medicine, Massachusetts General Hospital, 50 Staniford
Street, Suite 504A, Boston, MA 02114, USA
5
Clinician Educator, Department of Medicine, Massachusetts
General Hospital, 50 Staniford Street, Suite 504A, Boston,
MA 02114, USA
Introduction
Autism Spectrum Disorder (ASD) is a neurodevelopmen-
tal disorder characterized by repetitive and stereotyped
behavior, persistent difficulties in the social use of verbal
and non-verbal communication and social participation
and social relationship-based deficits (American Psychiat-
ric Association 2013). ASD is the fastest growing devel-
opmental condition in the United States to date affecting 1
in 68 children in the US (Centers for Disease Control and
Prevention 2014) with similar rates of incidence in adults
globally (Brugha et  al. 2011). ASD characteristics com-
bined with dependence on routine and sensitivity to audi-
tory/ visual stimulation can make inpatient hospitalization
a challenge (Suarez 2012). While patients with ASD may
be hospitalized for a number of reasons including psychi-
atric illnesses, respiratory illnesses and digestive illnesses,
higher rates of health care utilization among children with
ASD as compared to those without this condition have been
noted (Wu et al. 2014; Liptak et al. 2006).
Although the inpatient setting can be taxing for a myr-
iad of reasons, ASD patients with social and communica-
tion deficits, restricted patterns of behavior and sensitivity
to sensory cues may face heightened barriers to care while
hospitalized (American Psychiatric Association 2013).
For example, reduced eye contact and alternative body
language often seen in patients with ASD may be misper-
ceived by less experienced providers as behaviors related
to aggression or agitation. Insistence on sameness with
inflexible adherence to routines can be impractical in many
adult hospital settings. The likelihood of sensory over-
load for patients with ASD on inpatient units is also aug-
mented given the frequency of monitoring and noise often
present in inpatient settings. Sensations produced by light
touch (including wearing a bracelet or even a new article of
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clothing) as well as exposure to new or disagreeable smells
(disinfectant or a new soap) are all routine in hospitals
and can be irritating for a patient sensitive to these inputs.
In general, the environmental stressors and lack of ASD-
centered care can make the inpatient adult care setting less
than ideal for adults with ASD.
Despite these specialized needs of hospitalized patients
with ASD, pediatric studies performed in medical and psy-
chiatric settings demonstrate that careful planning of inpa-
tient hospitalizations can improve outcomes for patients
with ASD when hospitalized. Evidence-based improve-
ment includes the following: (1) development of special-
ized inpatient care pathways; (2) augmentation of com-
munication through partnership with patients and their
families; (3) avoidance of environmental triggers; (4)
reduction of non-essential testing/monitoring, (5) effec-
tive use of acute care plans. These interventions have been
shown to be important tools in improving care of pediat-
ric patients with ASD while hospitalized (Broder-Fingert
et  al. 2016; Giarelli et  al. 2014; McGuire et  al. 2016). A
comprehensive study by Gabriels and colleagues focused
on inpatient psychiatric admissions demonstrated that use
of these described interventions decreased the length of
stay for inpatients with ASD as well as reduced readmis-
sions in a pediatric psychiatric inpatient unit (Gabriels et al.
2012). Siegel and colleagues also demonstrated the efficacy
of acute care plans in patients with ASD while hospitalized
(Siegel et  al. 2014). Similarly, successful tools to reduce
anxiety have been underlined in pediatric studies of patients
with ASD during procedures or surgery (Marion et  al.
2016; Isong et al. 2014; Vlassakova and Emmanouil 2016).
These methods have been established as important tools to
improve the inpatient experience for patients with ASD.
Specifically, social stories and picture/visual schedules are
often incorporated by experienced caregivers of individuals
with ASD to curb distress and create familiarity with the
hospital or procedural settings (Vaz 2013; Mesibov et  al.
2002). Desensitization therapy has also been demonstrated
to assist patients with ASD in adjusting to new clinical
environments (May-Benson and Koomar 2010).
Although there is a wealth of literature and emphasis
on creating patient-centered care pathways for pediatric
patients with ASD, only recently has specialized care for
adults with ASD gained significant attention. Not surpris-
ingly, a number of studies demonstrate that adult providers
self- report being less than optimally equipped to care for
adult patients with ASD (Warfield et al. 2015; Zerbo et al.
2015). A survey of ~350 adult internal medicine provid-
ers highlights a lack of training with regard to adult ASD
care as a barrier and an interest in receiving more train-
ing in this area (Bruder et al. 2012). Reflexively, adequate
training in ASD care has been identified as a predictor for
higher provider-perceived competency in ASD care among
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J Autism Dev Disord
pediatricians (Golnik et al. 2009). More to the point, adult
patients with ASD report reduced satisfaction with medi-
cal care and increased unmet care/communication needs as
compared to adults without ASD (Nicolaidis et  al. 2015;
Gotham et al. 2015).
Published best practices in caring for adults with ASD
are nascent but developing. Work outlining the journey
as patients transition from pediatric to adult providers has
been described. In Kuhlthau et  al., expert panels of pedi-
atric providers recommended the following: (1) preparing
transitional summaries describing pre-existing pediatric
medical histories for adult providers; (2) supplying transi-
tioning patients with recommendations for the accepting
adult provider to consider; (3) warm- handoff based com-
munication between pediatric and accepting adult provid-
ers; (4) use of transition checklists by accepting adult pro-
vider s (Kuhlthau et  al. 2015). Relevant to hospital based
care, McGonigle and colleagues brought together a diverse
panel of experts to develop didactic and training materials
for optimal care of adult patients with ASD in the emer-
gency department setting (McGonigle et al. 2014).
Given the large number of pediatric patients with ASD
that will ultimately require medical care as adults and the
unique needs of patients with ASD when hospitalized,
greater investigation into interventions and care pathways
for inpatient adults with ASD are needed. To address this
need at our home institution, we created the Massachu-
setts General Hospital Autism Care Collaborative (ACC),
a diverse set of clinical experts and providers in pediatrics,
adult medicine and neurology charged with creating and
disseminating materials outlining best practices for the care
of adult inpatients with autism.
Methods
Autism Care Collaborative Construction and Mission
Based on limited current literature dedicated to adult inpa-
tient best practices and the historical use of expert panels
in the construction of other meaningful improvement path-
ways for patients with ASD (McGonigle et al. 2014; Kuh-
lthau et al. 2015), an expert panel was identified as the best
method for developing improvement in ASD care. This
team of multidisciplinary experts and parents of adults with
ASD was convened as the MGH Autism Care Collabora-
tive (ACC) in 2014. The ACC was comprised of leaders in
ASD pediatric care including occupational/speech thera-
pists, nursing supervisors, pediatric and adult medicine/
neurology physicians, case managers and parents of adults
with ASD. The ACC was created with three distinct goals
in mind: (1) to educate internal medicine adult inpatient
providers and staff on the unique needs of adults with ASD
J Autism Dev Disord
when hospitalized; (2) to create ASD specific resources for
internal medicine adult inpatient providers; (3) to optimize
patient care from admission to discharge among adults
with ASD admitted to internal medicine services. These
resources were developed with the support, guidance and
engagement of the hospital leadership and all multidiscipli-
nary stakeholders mentioned.
Toolkit Rationale, Development, Description
and Application
A number of real-time clinical cases (as adapted in Fig. 1)
were reviewed by the ACC to illustrate gaps in care needs
experienced by adult patients with ASD as they transi-
tioned from the emergency department to the medical unit
prior to discharge. As a part of a hospital-wide mission led
by our hospital leaders, the root-cause of many of these
gaps was found to be a lack of ASD-centered care deliv-
ery. The identification of these unmet care needs served as
the road-map for toolkit content and construction. As such,
the ACC developed a toolkit for providers and patients. A
literature review was completed and no examples of pre-
existing toolkits for adult ASD populations were identified
that could be used for toolkit derivation. A team approach
was utilized to generate consensus on the development
of toolkit materials. All materials were piloted on several
adult internal medicine units prior to implementation. The
Admission Basics Checklist (Fig. 2) and the Clinical Care
Algorithm (Fig. 2) were designed by consensus of the ACC
to help create ASD-sensitive care environments and edu-
cate providers on best practices in clinical care of patients
with ASD when hospitalized. The primary goal of the
Admission Basic Checklist was to create a protocol for the
types of orders, consultants, monitoring and environmen-
tal descriptors that should be considered when admitting a
patient with ASD. The Clinical Care Algorithm was spe-
cifically focused on developing a pre-existing resource for
managing adult patients with ASD with limited verbal com-
munication, certain behavioral triggers and patient/fam-
ily expectations. The Autism Care Questionnaire (Fig.  3)
was based on a care plan originally developed for pediatric
inpatients (Broder-Fingert et al. 2016) and was designed by
ACC consensus for survey of ASD patients and/or caregiv-
ers. Constructed to help identify preferred modes of patient
communication and elicit patient/family preferences prior
to and during care delivery, the Autism Care Question-
naire may be administered by outpatient providers prior to
admission or by inpatient providers at the time of admis-
sion. Specific domains of the questionnaire include inquiry
around baseline patient communication and sensory needs,
expected behaviors and social cuing, patient-specific toler-
ances/triggers and preferences for methods to resolve esca-
lating behavior. As a living document within the electronic
medical record, this questionnaire may be updated dur-
ing encounters for future reference. The Case Manage-
ment Guide (Fig.  4) was assembled through consensus of
the ACC to serve as a case management resource to assist
discharge teams in linking patients with needed discharge
resources. These resources may include rehabilitation or
skilled nursing facilities with capacity to care for patients
with ASD or even outpatient disability resources. While
this resource created by the ACC is specific to the MGH
care environment, we would recommend that care settings
construct their own cite-specific resource for care manage-
ment use.
Each of these resources was piloted on chosen medical
floors and iterative changes were driven by feedback from
all providers and caregivers of patients with ASD. As dem-
onstrated below, the phases of care from the emergency
department to the discharge stage helped define the appli-
cation of the toolkit deliverables during hospitalization.
Discussion
Triage/Emergency Department
Busy emergency departments can be a difficult setting for
any patient and particularly for patients with ASD that may
be sensitive to excessive sound and visual stimuli. A recent
study examining visual and auditory stimuli as obstacles
to care delivery in pediatric populations with ASD found
that noise levels in the emergency room of an urban teach-
ing hospital setting were in excess of both WHO and EPA
recommended maximums for public health and welfare
(Suarez 2012). In addition, routine clinical activities such
as blood pressure or heart monitoring may be stressful for
some patients with ASD due to their sensitivity to these
inputs (Giarelli et al. 2014).
Having a standard approach for caring for patients
with ASD as described in the Admission Basics Check-
list (Fig. 2) can ease the processes of care associated with
the clinical encounter by ensuring that providers in the
emergency department have the background knowledge
to tailor environmental stimuli, communication and clini-
cal diagnostics in a way that embraces ASD. In doing so,
the Admission Basics Checklist can drive improvement in
the patient experience by identifying key consultants early,
expediting streamlined diagnostics, decreasing time spent
waiting in open or overflow areas and identifying logistical
or administrative barriers to admission (i.e. room and unit
specifications needed for patients with ASD). In caring for
those ASD patients with limited verbal communication and
inability to provide history, the Admissions Basic Checklist
may serve as a vital guideline to organize what could be
an unfamiliar process of triaging patients with ASD. Other
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 J Autism Dev Disord

Ausm Clinical Case

21 yr old non-verbal paent with ausm spectrum disorder presented to ED with abdominal pain with
decreased appete.

Days 1-2:

- A 21 yr old male with ASD and minimal verbal communicaon arrived to the Emergency
Department with his parent/guardian for evaluaon.

- Per the paent parent/guardian, the chief complaint was decreased interacvity, lower
quadrant abdominal pain and reduced appete x 3 days as noted by group home staff where
the paent was housed.

- Vitals were taken and were T 98.2 HR 78 BP 121/78 RR 18 Sang 100% on RA.

- Due to high paent volumes in the Emergency Department, the paent was placed in the
hallway of the Emergency Department unl a private paent bay became available.

- Nursing intake was completed with the paent parent/guardian offering all answers to
quesons social habits and family history.

- The paent was evaluated by ED physician staff with the paent’ parent/guardian. Physical
exam was noted to be unremarkable though the exam was limited by paent cooperaon. A
complete blood chemistry, comprehensive metabolic panel, chest x-ray, and urinalysis were
ordered.

- An IV was placed per protocol by the IV team and IV fluid were started.

- The urinalysis returned with elevated white blood cells (80/hpf) and abundant leukocyte
esterase.

- A diagnosis of urinary tract infecon was made and IV anbiocs were iniated.

- An inpaent bed request was sent to the adming department nofying them of the paent’s
pending admission for urinary tract infecon.

- Aer several hours, paent agitaon was noted and haloperidol IV was administered x 1.
Security was involved and spoke with the paent/guardian.

- The paent’s parent/guardian made several requests that the paent be moved into an
Emergency Department Bay or be transferred to his inpaent room as soon as possible. The ED
staff informed the paent’s parent/guardian that the paent would be transferred to very first
inpaent bed available.

Fig. 1  Autism Admission Basics and Care Algorithim

individualized interventions that should be encouraged to provide distraction during periods of inactivity and post-
include introducing earphones to limit noise, supplying ing familiar pictures or images from home in patient rooms
patients with recreational reading material or activity boxes to provide a sense of reassurance. Since the emergency

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J Autism Dev Disord

- Aer an addional 4 hours, a bed on an inpaent floor became available and the paent was
transported with the paent parent/guardian to an inpaent medicine unit for admission.

- Nursing intake was completed with the paent parent/guardian offering all answers to
quesons social habits and family history.

- Arrival of paent to unit room with alcoholic roommate in delirium. The paent’s
paent/guardian requested to be transferred to a private or single room and was informed of
limited availability for a single room at that me.

- Vitals were taken and were T 98.1 HR 74 BP 119/72 RR 18 Sang 100% on RA.

- RN intake was completed with the paent parent/guardian offering all answers to quesons
social habits and family history.

- The paent was then evaluated by physician staff with the paent’s parent/guardian. Physical
exam was noted to be unremarkable though the exam was again limited by paent cooperaon.

- A complete blood chemistry, basic metabolic panel was ordered.

- Aer mulple aempts, all blood work was obtained and sent to the lab.

- Standing orders were placed per protocol including daily labs, telemetry monitoring and vitals
every shi
- Aer several hours of being on the medicine floor, the paent became increasingly agitated and
removed his IV twice.

- The IV was replaced a third me while the parent guardian happened to be out of the room.

- Per nursing request a so restraint was placed to preserve the IV access for IV fluids and IV
anbioc therapy.

- On return to the room, the paent’s parent/guardian was shocked and dismayed to see that the
paent was restrained and demanded an explanaon from nursing as to why this occurred. He
was informed by nursing and physician staff that the restraint was a simply a effort to maintain
IV access and prevent the paent from hurng himself by repeated pulling out the IV.

- Security was called as a near altercaon erupted between the paent’s parent/guardian and
nursing staff

- The nurse assigned to the paent’s care was reassigned and a new nurse was assigned to the
paent’s care.

- Mulple subsequent nursing reassignments were made due to dissasfacon of the paent’s
parent/guardian with nursing resulng in disorder and delayed care throughout the floor

Fig. 1  (continued)

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- A meeng with the paent’s parent/guardian, physician staff, the nursing unit director occurred
and agreement on the methods of improved communicaon with the paent’s parent/guardian
and the plan of care was achieved

- Eventual improved communicaon between MD/RN staff and paent guardian with agreement
on paent/guardian requests for communicaon and care delivery

Days 3-6:

- Vitals, monitoring and blood draws were minimized with improved care delivery on hospital day
2-4.

- Noted paent clinical improvement by hospital day 5 and paent/guardian was nofied of
likely discharge the following day

- On day of discharge, the group home director arrived and completed an individual assessment
of the paent and reviewed the hospitalizaon events. The group home director asked the
physician and case manager to complete all new medicaons, follow-up appointments and
discharge instrucons on the group home forms prior to accepng the paent back to the group
home as a resident.

- Due to this unancipated request from physician and case management providers, the paent
was le‡ the floor approximately 5 hours a‡er being discharged in the electronic medical record.

Fig. 1  (continued)

department represents the first place that patients encounter
urgent or emergent care, it can set the tone is set for the
remainder of the forthcoming medical encounter.
Admission/Unit Floor
The medical unit often represents the next critical point of
clinical contact for adult patients with ASD admitted to the
hospital with a medical complaint. Preferably, all medi-
cal floors would be equipped to address the communica-
tion methods, individualized learning styles and sensory
needs of patients with ASD. However, this is generally not
the case. To help identify preferred modes of patient com-
munication and elicit patient/family preferences prior to
and during care delivery, the ACC developed the Autism
Care Questionnaire (ACQ; Fig. 3). This questionnaire was
designed to guide discussion focused on care planning
preferences between providers and patients before and at
the time of admission. Understanding pre-existing or best
modes of patient communication, points of concern for
patients/families and patient/family overall expectations for
hospitalization is critical to ensuring effective and efficient
care delivery. By identifying individualized preferences of
patients, the ACQ assists care teams in bridging yet unseen
care gaps and helps bring patients/families to the center
of their care process. As presented in the ACQ, baseline
patient behaviors, social interactions, communication pref-
erences, sensory environmental triggers and safety domains
should be addressed early in the course of the admission to
drive optimal therapeutic and diagnostic interventions. The
perspectives and preferences of caregivers/families are an
integral element of care delivery and should be addressed.
Incorporating a tool like the ACQ at the time of admission
can greatly assist in anticipating the care of ASD patients
and thus avoid the outcome described in our clinical case.
The Clinical Care Algorithm (Fig. 2) may also be valu-
able in the inpatient setting when common clinical sce-
narios arise. Having a sense of how to manage agitated or
non-verbal patients as well as dissatisfied patients/families
is key. This algorithm may serve as a guide in what may
otherwise be uncharted territory for some adult inpatient
internal medicine providers. The importance of utiliz-
ing an established care plan is underscored by the experi-
ence at The Children’s Hospital of Colorado which found
a decrease in rates of psychiatric readmissions and over-
all lengths of stay with the implementation of a patient/
caregiver- influenced plan of care and a stimulus reducing
protocol (Gabriels et al. 2012). No current literature exists
examining similar outcomes for adults hospitalized in inter-
nal medicine settings. The Clinical Care Algorithm is a

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MGH Patient Care Collaborative 1

Care of Inpaents with Ausm @ MGH: Admission 101 Basics and Diagnosc Algorithms

The MGH Ausm Care collaborave represents an interdisciplinary group of clinical providers dedicated
to opmizing care for inpaents with Ausm Spectrum Disorder (ASD).

Paents with Ausm may face a series of unique challenges when admied to the hospital that include
but are not limited to:

• Disrupons to established rounes that may promote emoonal outbursts

• Distress in a seng of medical illness that precipitates regression in communicaon skills
(previously verbal paent becomes non-verbal)
• Sensory overload due to unfamiliar noise, light and environmental factors
• Difficulty interpreng and expressing clinical signs and symptoms

As a result, the unique care needs of the ausc paent must be known to the care team and changes in
both diagnosc and therapeuc approaches should be made accordingly.

Materials created by the Ausm Collaborave to facilitate this process include the following (all
available on Sharepoint at hp://sharepoint.partners.org/mgh/ausmcollaborave):

• Admission 101 basics and clinical algorithm (current guide): a resource to help
providers think about key issues in caring for ausc paents in the hospital
• Power point on Ausm Basics for the Inpaent Provider: power point document
intended for clinicians taking care of paents with ASD
• Ausm order sets (available via Epic in 2016): Limited order sets that prompt providers
to think about unique orders and consultants that are appropriate for ausc paents
• Clinical Floors of Excellence: Bigelow 9, Ellison 19, Ph 20 established as floors with
addional training in care of inpaents with ausm. If your quesons are not answered
by the available guides please page the floor and ask for the Aending Nurse for
addional advice.
• Ausm Quesonnaire: A word based document to be filled out by the paent and
family that helps to define communicaon style and needs, decision making authority
and paent/family preferences.
• What to expect for paents and families: A word document that can be made available
to families to help familiarize them with the rounes and teams associated with being
admied to an adult inpaent unit.
• Case management resource guide: Quick go to resource for case managers that outlines
ausm specific community resources including local group homes appropriate for
ausc paents.

Fig. 2  Autism Admission Basics and Care Algorithm

13

Basic Concepts to consider when adming an ausc paent from the ED:
Fig. 2  (continued)
unique contribution to this landscape. Additional studies in
adult internal medicine populations with ASD are needed.
Discharge/Unit Floor
The need for anticipatory discharge planning is particu-
larly prudent for hospitalized adults with ASD who may
have specific needs and limited outside resources available
to facilitate their post-discharge care. Ensuring clarity of
the discharge care plan (including changes in mediations,
dietary instructions, and post- discharge appointments) can
be demanding in most clinical scenarios. This can be fur-
ther magnified for patients with communication barriers.
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MGH Patient Care Collaborative 2
Early establishment of the care plan with consensus from
care teams and patients/caregivers as well as identification
of post- discharge care needs can work to mitigate miscom-
munication while fostering well coordinated care. Although
this sort of preparation at discharge is recommended for all
patients, the disposition for some patients with ASD may
require transition to group homes or other supported liv-
ing environments. As such, additional preparation includ-
ing individualized or custom requirements for acceptance
or re-introduction of a patient to their prior facility after
an acute hospitalization, (i.e. group home staff review of
medications, instructions and discharge summary) may be
required. Case management guidance to coordinate and
J Autism Dev Disord

MGH Patient Care Collaborative 3

The ongoing care of a paent with ausm is facilitated by early idenficaon of their behavioral and
sensory needs to opmize care. Please see the guide below to help you think about these opons.

1. Idenfy communicaon needs

2. Avoid medicaons if possible in management of delirium or agitaon

Fig. 2  (continued)

expedite review and communication with group home or
accepting facility staff can be central to avoiding discharge
delays.
For adults with ASD, discharge planning can also high-
light the overall lack of resources for adult inpatients with
ASD and ongoing physical therapy or behavioral needs.
For example, case management may be challenged to find
local city or state support resources for patients being dis-
charged to home. Obtaining post-discharge services for
adult patients with ASD has been identified in psychiatric
inpatients settings as one of the greatest barriers to dis-
charge for this population (Siegel et al. 2012). Often there
is also a lack of post-acute care facilities that can accom-
modate adult patients with moderate to severe ASD. To
help address these issues at our institution, we developed
a case management resource (Fig.  4) for inpatients adults
with ASD to aid case managers at the time of discharge.
While many of the listings on the case management
resource are specific to our local and state surroundings,
we encourage its use as a template for structuring similar
resources best fit to individual care settings. Underscoring
the importance of such resources, a recent study among
parents of patients with ASD revealed a lack of knowledge
with regard to agency resources, transitional/ home ser-
vices, or financial services available in their local settings
(Advancing Futures for Adults with Autism, 2008, Center
for Autism and Related Disabilities). In this way, discharge
may represent a unique opportunity for case management
providers and inpatient care teams to provide additional
educational and support resources to patients with ASD
and their caregivers.
Conclusion/Summary
Ultimately, the inpatient adult environment is ill-pre-
pared for patients with ASD that have limited means of

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MGH Patient Care Collaborative 4

3. Asses paent and family needs

Fig. 2  (continued)

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Where to find addional resources:
• hp://sharepoint.partners.org/mgh/ausmcollaborave
• hp://ausmandhealth.org for more detailed informaon about ausm and the care of adults
with ASD
• MGH Lurie Center:
hp://www.massgeneral.org/children/services/treatmentprograms.aspx?id=1614&utm_source
=massgeneralforchildren.org&utm_medium=redirect&utm_campaign=lurie-center
Fig. 2  (continued)
communication and sensory challenges. As the number of
adult patients with ASD presenting to inpatient settings
continues to grow, providers and healthcare institutions at
large will need to develop a deeper understanding of the
unique needs of these patients to provide value-added clini-
cal care.
Here we describe a toolkit that may serve as a guide to
institutions and practitioners to assist in meeting the needs
of the growing adult population with ASD. The toolkit
includes a clinical case, an Admissions Basics Checklist,
a Clinical Care Algorithm, an Acute Care Questionnaire
and a Case Management Resource. While the Admission
Basics Checklist, Clinical Care Algorithm and Case Man-
agement Guide may be limited by their specificity to MGH
and inpatient medical settings in general, these tools may
serve as modifiable templates to establish organizational
standards for institution-specific use. We aspire to complete
a formal evaluation process of the toolkit implementation
and to expand the work of this collaborative to include
educational videos for clinical and non-clinical providers,
electronic order sets for admitting providers and an ASD
inpatient adult consultation service. We hope that the con-
cept of an ASD toolkit generates additional discussion and
study focused on optimal care delivery for inpatient adults
with ASD.
MGH Patient Care Collaborative 5
Acknowledgements The authors acknowledge the assistance,
reviews and suggestions of all MGH Autism Care Collaborative mem-
bers including Gino Chiasri, Melissa Joseph, Zary Amirhosseini,
Susan Connors, Christine Ferrone, Sheila Golden-Baker, Tristan Gor-
rindo, Jessica Helt, Carole Mackenzie, Brenda Miller, Karen Morse-
Gallagher, Janet Rico, Jaime Lee Rossi, Tara Termezy, Pamela Wrig-
ley, Melissa Joseph, Eve Megargel, Kathleen Buckley, Ann Fonseca,
Karen Turner, Victoria Peake, Amy Maguire, Rachel Toran Towbin,
Amanda Coakley and the MGH Autism Collaborative founders Peter
Greenspan and Debra Burke.
Special thanks to the Ruderman Foundation and the Special Hope
Foundation for their support of this work.
Author Contributions  All the authors made substantive contribu-
tions to the design and construction of this manuscript and all authors
agreed upon and endorsed the narrative described. JC, CI and SB-F
wrote the original manuscript. AK and CI were responsible for all fig-
ure construction. CI, AN and AG completed subsequent/final critical
revisions for important intellectual content.
Compliance with Ethical Standards 
Conflict of interest  The authors declare that they have no conflict
of interest.
Ethical Approval  This article does not contain any studies with
human participants performed by any of the authors.
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 J Autism Dev Disord

Autism Care Collaborative 1

Autism Care Questionnaire (ACQ)

We want to make sure this hospital visit is a positive experience. Please fill out this form to help
us learn about you/the patient so we can better meet your/the patient’s needs.

Patient Information
Date: ______________________________________
Patient’s name: ______________________________
Patient’s date of birth:_________________________
Patient’s age: _______________________________

Name of person completing this form:

What is your relationship to the patient?____________________________________________

Does the patient have a guardian (circle one)? Yes No

Guardian’s name:
Guardian’s contact information:
If the guardian is appointed by the court, a copy of the guardianship should be submitted to the
hospital.

Does the patient have a health care proxy (circle one)? Yes No
Health Care Proxy’s Name:______________________________________________________
Health Care Proxy’s contact information:___________________________________________

Communication:
1) How does the paent prefer to communicate needs/wants? (check one)
Talking
Making sounds, grunng, yelling
Sign language
Poinng/gesturing
Pictures or symbols
Pictures with words
Typed words
Handwrien words
Using tablet or communicaon device
Facial expressions (smiling, frowning, etc.)
Other: _____________________________

2) What other ways will the paent tell us what he/she needs/wants? (check all that apply)
Talking
Making sounds, grunng, yelling

Page 1

Fig. 3  Autism Care Questionnaire

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J Autism Dev Disord

Autism Care Collaborative 2

Sign language
Poinng/gesturing
Pictures or symbols
Pictures with words
Typed words
Handwrien words
Using tablet or communicaon device
Facial expressions (smiling, frowning, etc.)
Other: _____________________________

3) How does the paent communicate “yes” or “no” when asked a

question?_________________________________________________________________________
_________________________________________________________________________________

4) How does the paent learn new informaon or instrucons (Check all that apply)?
Talking
Sign language
Pictures or symbols
Pictures with words
Typed words
Handwrien words
Stories
Using tablet or communicaon device
To Do/finished boards
First/then boards
Other: _____________________________

5) How does the paent know that me is passing?

Using a clock or watch
Using a mer
Using schedule boards
Counng aloud
Other: _________________________

6) What is the best way for us to tell the paent how long he/she will be si­ng in the waing room,
waing for a test, or how long the test will take?
_________________________________________________________________________________ _
_________________________________________________________________________________ _
7) How will the paent tell us that he/she has to go to the bathroom?
_________________________________________________________________________________ _
_________________________________________________________________________________ _
8) How will the paent tell us if he/she is hungry or thirsty?
__________________________________________________________________________________
__________________________________________________________________________________
9) How will the paent let us know if he/she is in pain (Check all that apply)?

Page 2

Fig. 3  (continued)

13
 J Autism Dev Disord

Autism Care Collaborative 3

Talking
Making sounds, grunng, yelling
Crying
Sign language
Poinng/gesturing
Pictures or symbols
Pictures with words
Typed words
Handwri
en words
Using tablet or communicaon device
Facial expressions (frowning, etc.)
Hi€ng or hurng self
Hi€ng or hurng others

10)Are there other clues that will let us know if the patient is in pain?
______________________________________________________________________________

The Hospital Visit and Examination

1) How should we greet the paent? _________________________________________________
2) What is the best way for us to examine the paent (Check all that apply)?
Communicate with the paent (using the favored communicaon method) before each step of the
exam
List or count things that the doctor needs to do (i.e. 1-look at eyes, 2-look in ears, 3-listen to heart,
etc.)
Allow the paent to touch any instruments (i.e. stethoscope, blood pressure cuff) him or herself
Hide instruments unl their use becomes necessary
Do parts of the exam on someone else first
Distracon
Other:

3) Is there a part of the exam that the paent will not like (Check all that apply)?
Using a stethoscope to listen to lungs
Checking blood pressure with the cuff
Eye test
Ear test
Looking in mouth/throat
Belly exam
Tesng reflexes
Other:

Page 3

Fig. 3  (continued)

13
J Autism Dev Disord

Autism Care Collaborative 4

4) Will the paent wear a hospital gown (circle one)? Yes No

If no, what would the patient want to wear?_____________________________

5) Will the paent wear a hospital ID band on their wrist (circle one)? Yes No
If no, please let us know before the patient comes to the hospital if possible.

Comfort and Safety

1) Is the paent sensive to (Check all that apply):

Loud noises
Unexpected noises
Bright lights
Specific colors
Fragrances/smells
Textures
Touch
Specific types of touch

2) How long does the paent usually sleep at night?____________________________________

3) Will a si€er be used to help ensure that that the paent is safe (circle one)? Yes No
If yes, what hours will the sitter be at the hospital?____________________________

4) Does the paent have any food allergies (circle one)? Yes No

If yes, what are the allergies?_____________________________________________

5) Is the paent on a special diet (circle one)? Yes No

If yes, what type?_______________________________________________________

6) Are there special mes of the day that the paent eats snacks or meals (circle one)? Yes No

If yes, what times?______________________________________________________

7) Does the paent like to separate food on a plate or use different plates for different
Foods (circle one)? Yes No

If yes, what does the patient like?__________________________________________

8) Are there any words, phrases or acons that will upset the paent (circle one)? Yes No

Page 4

Fig. 3  (continued)

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 J Autism Dev Disord

Autism Care Collaborative 5

If yes, what are

they?_____________________________________________________________________________
_________________________________________________________________________________ _

9) How will the pa

ent let us know if he/she is upset/anxious (check all that apply)?
Talking
Making sounds, grunng, yelling
Sign language
Poinng/gesturing
Pictures or symbols
Pictures with words
Typed words
Handwrien words
Using tablet or communicaon device
Facial expressions (smiling, frowning, etc.)
Physical moons (rocking, flapping, squeezing hands)
Hiƒng or hurng self
Hiƒng or hurng others

10) What are the first things we should do if the pa

ent is upset/anxious (check all that apply)?
Leave him/her alone
Give the him/her some space
Talk to him/her
Other

11) Would any of these help us decrease the pa

ent’s anxiety (check all that apply)?
A map of the hospital
An escort that will help the paent around the hospital
Low lighng
Sunglasses
Headphones to decrease noise
A heavy blanket
Music
Videos
Puzzles/games
Other

Page 5

Fig. 3  (continued)

13
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Autism Care Collaborative 6

12) Are there any other safety concerns we should know about (circle one)? Yes No
If Yes, what are the concerns?
__________________________________________________________________________________
__________________________________________________________________________________
13) Is there anything else we should know about so we can make the paent’s hospital visit as
posive as possible?

__________________________________________________________________________________
__________________________________________________________________________________

Page 6

Fig. 3  (continued)

13
 J Autism Dev Disord

MGH Autism Care Collaborative

Ausm Resource Guide for Case Management

I: Services
The
Bridgewell
Contact Grace Marn, RN at (781) 593-1088

Provides comprehensive services for individuals with disabili

es and other life challenges.
Services include day care, residen
al and recrea
onal programming.

May Instute of Boston

Contact Donna Chiacha, RN at (617) 325-6700

Provides educa
onal and physical/behavioral therapy programming services for adults with
au
sm.

II: Educaon/Support
MGH Resources

The Blum Center

Contact Brian French at (617) 724-7352

Resource center for pa

ent and family learning.

The Lurie Center

(781) 860-1700

The Lurie Center is a mul

disciplinary program designed to evaluate and treat children,
adolescents and adults with a wide variety of condi
ons including au
sm and au
sm
spectrum disorders, Asperger syndrome and developmental delays.

The Bressler Foundaon

Contact Alyssa Bertolon at (617) 726-7899

The Alan and Lorraine Bressler Clinical and Research Program for Au
sm Spectrum
Disorders is dedicated to the evalua
on and care of children, adolescents, and young
adults with Au
sm Spectrum Disorder (ASD).

Page 1

Fig. 4  Autism Case Management Tools

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J Autism Dev Disord

- Aer an addional 4 hours, a bed on an inpaent floor became available and the paent was
transported with the paent parent/guardian to an inpaent medicine unit for admission.

- Nursing intake was completed with the paent parent/guardian offering all answers to
quesons social habits and family history.

- Arrival of paent to unit room with alcoholic roommate in delirium. The paent’s
paent/guardian requested to be transferred to a private or single room and was informed of
limited availability for a single room at that me.

- Vitals were taken and were T 98.1 HR 74 BP 119/72 RR 18 Sang 100% on RA.

- RN intake was completed with the paent parent/guardian offering all answers to quesons
social habits and family history.

- The paent was then evaluated by physician staff with the paent’s parent/guardian. Physical
exam was noted to be unremarkable though the exam was again limited by paent cooperaon.

- A complete blood chemistry, basic metabolic panel was ordered.

- Aer mulple aempts, all blood work was obtained and sent to the lab.

- Standing orders were placed per protocol including daily labs, telemetry monitoring and vitals
every shi
- Aer several hours of being on the medicine floor, the paent became increasingly agitated and
removed his IV twice.

- The IV was replaced a third me while the parent guardian happened to be out of the room.

- Per nursing request a so restraint was placed to preserve the IV access for IV fluids and IV
anbioc therapy.

- On return to the room, the paent’s parent/guardian was shocked and dismayed to see that the
paent was restrained and demanded an explanaon from nursing as to why this occurred. He
was informed by nursing and physician staff that the restraint was a simply a effort to maintain
IV access and prevent the paent from hurng himself by repeated pulling out the IV.

- Security was called as a near altercaon erupted between the paent’s parent/guardian and
nursing staff

- The nurse assigned to the paent’s care was reassigned and a new nurse was assigned to the
paent’s care.

- Mulple subsequent nursing reassignments were made due to dissasfacon of the paent’s
parent/guardian with nursing resulng in disorder and delayed care throughout the floor

Fig. 4  (continued)

13
 J Autism Dev Disord

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