Volume 65 Number 2 April 2022

ARTICLE

Accessibility and Inclusion for Families with Children with Autism

Spectrum Disorders in Cultural Institutions
Libby HLADIK , Robin MEYER, Scott ALLEN, Sandra BONNICI, Nicole A. FROELKE, Holly ROMANIAK,
Yasmeena OUGAYOUR, Nicole NELSON, Abdullah K. ALKHAMEES, Heather DAVIS, AND Karla K. AUSDERAU

Correspondence Abstract This project aimed to develop a comprehensive set of evaluation

Correspondence
Libby Hladik, and Dr. Karla Ausderau, tools to assess the accessibility and inclusion of families with children on the
Libby Hladik,of
Department and Dr. Karla Ausderau,
Kinesiology, Occupational autism spectrum in cultural institutions. A stakeholder team conducted
Department
Therapy of Kinesiology, Occupational
Program,
Therapy Program, University of Wiscon-
interviews, reviewed museum artifacts, and observed museum programming.
University of Wisconsin at Madison,
sin at Madison,
Madison, WI, Madison, WI, USA. An evaluation toolkit was constructed by incorporating best practices from
Emails: [email protected];
USA. current literature and collected data. Tools were piloted and revised after
[email protected]
Emails: [email protected]; being implemented in the museum context. The Toolkit to Increase
[email protected] Accessibility and Inclusion for Children on the Autism Spectrum and with
Sensory Processing Differences in Cultural Institutions was developed with
five unique tools, the Dimensions of Accessibility framework, and further
resources to provide a self-assessment of cultural institutions. The toolkit can
be used broadly across many types of institutions and self-assessment can
lead to proactive development of public spaces, institutions, and programming
that is accessible and inclusive of diverse groups of people, beyond families
with children on the autism spectrum.

Libby HLADIK ([email protected]) is an occupational therapist and PhD student at University of Wisconsin-Madi-
son. Her research interests include holistic family well-being for families with children with developmental disor-
ders including community engagement in public institutions.
Robin MEYER ([email protected]) is an occupational therapist in Salt Lake City, UT.
Scott ALLEN ([email protected]) is an LPC-IT and works with autistic adult and teenage clients as well as fami-
lies and partners. As a person with a diagnosis of Asperger’s Syndrome, he knows that most people’s assump-
tions about social standards often don’t work for people on the autism spectrum.
Sandra BONNICI ([email protected]) is a Sr. DE&I Consultant for Mass General Brigham and a Diversity
Equity, Access, and Inclusion Fellow for the American Alliance of Museums. She is the former Associate Director
of Education, Diversity, and Inclusion at Madison Children’s Museum.
Nicole A. FROELKE ([email protected]) is an occupational therapist, OTR/L, OTD working in mental
health utilizing sensory processing knowledge to create a calming and stimulating environments. She is the mom
of a daughter who has Sensory Processing Disorder, Pervasive Developmental Disorder-Not Otherwise Specified.
Holly ROMANIAK ([email protected]) is an occupational therapist and currently works at Giant Steps Autism
Organization, a 501(c)(3) therapeutic day school for individuals with autism. She primarily works with young
adults ages 18–22 during their transition from school to adult life.
Yasmeena OUGAYOUR ([email protected]) is a pediatric occupational therapist working in schools while pursu-
ing her OTD with a focus on maternal and infant health for parenting and pregnant adolescents.
Nicole NELSON ([email protected]) is an occupational therapist.
Abdullah K. ALKHAMEES ([email protected]) is an occupational therapist and PhD student at University of
Wisconsin-Madison. His research focuses on health and well-being in children with neurodevelopmental disabil-
ities and their caregivers.
Heather DAVIS ([email protected]) is the Early Learning Manager at Madison Children’s
Museum. Heather coordinates early childhood research partnerships at the museum, drawing upon her many
years of experience in early childhood education and family services.
Karla K. AUSDERAU ([email protected]) is an Associate Professor at the University of Wisconsin-Madison and Investigator
at the Waisman Center. Stakeholder collaboration is an essential component of her research agenda, which focuses on the
health and well-being of families and children with neurodevelopmental disabilities in ecologically valid contexts.

Curator: The Museum Journal 2022, 65.2 435–449 DOI: 10.1111/cura.12468

© 2022 The Authors. Curator: The Museum Journal published by Wiley Periodicals LLC. 435
This is an open access article under the terms of the Creative Commons Attribution-NonCommercial-NoDerivs License,
which permits use and distribution in any medium, provided the original work is properly cited, the use is non-commercial
and no modifications or adaptations are made.
CURATOR: THE MUSEUM JOURNAL

BACKGROUND

Autism spectrum disorder (ASD) prevalence is estimated that 1 out of 54 children in the United
States have an ASD diagnosis (Maenner, 2020). Children on the autism spectrum have ongoing
challenges in social interactions and communication, demonstrate restricted and repetitive behaviors
and interests, and often have sensory processing differences (American Psychiatric Association,
2013). These differences, such as over- or under-responsiveness to sensory information in the envi-
ronment, influence participation in both home and community activities (Ismael et al., 2018). In
addition, core characteristics of ASD often manifest as rigidity with a need for structure and predict-
ability in daily activities and the environment. Lights, sounds, textures, and other environmental
input can cause over- or under- stimulation for children on the autism spectrum which can lead to
challenges with integrating sensory input to be able to participate (Baranek et al., 2015). Sensory
integration challenges can impact engagement in meaningful activity from daily tasks to community
participation, including visiting cultural institutions with their family.

Families with children on the autism spectrum face barriers to participation in community set-
tings that may require additional adaptations for meaningful family participation. Autism symptom
severity can directly affect the frequency of a child’s participation (Little et al., 2015). Askari et al.
(2015) noted that children on the autism spectrum participated in fewer leisure activities and were
more often in the home with adults or by themselves, limiting opportunities for social engagement.
In addition to social barriers, researchers have noted that sensory processing plays a large role in daily
participation in activities such as self-care, play, and education. Lawson and Foster (2016) found that
children on the autism spectrum with sensory-avoiding behaviors (i.e., over-responsiveness to sen-
sory information) participated in fewer recreational activities. Interventionists, specifically occupa-
tional therapists, have found that targeting the child’s sensory integration increases participation in
activities of daily living (Schaaf et al., 2015). The unique needs of a child on the autism spectrum sig-
nificantly impact their home and community participation, but their needs also influence the broader
family’s access to and participation in community spaces as well.

Parents and caregivers facilitate participation for children on the autism spectrum, adapting
components of the activity or environment to meet their child’s unique sensory and behavioral needs
(Pfeiffer et al., 2017). In addition, families often choose those specific activities based on the child’s
individualized needs (Bagby et al., 2012; DeGrace, 2004). Families may limit their participation in
community events or avoid cultural institutions, such as museums, libraries, and community centers
solely based on the needs of the child on the autism spectrum (Kulik & Fletcher, 2016; Lussenhop
et al., 2016). Limiting participation to cultural institutions in the community impacts all family
members, which may decrease the opportunity for cultural, social, and educational engagement that
fosters overall well-being. Consequently, all family members are at risk for higher stress, reduced
health outcomes, and decreased family cohesion (Iadarola et al., 2017).

The way families choose and prepare for outings, may differ for families with children on the
autism spectrum compared to families without children on the autism spectrum (Bagby et al., 2012).

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In addition, the shared meaning and feelings among family members may also be different. Families
with children on the autism spectrum may decline attending social engagements or avoid specific
public places to prevent over-stimulating their child on the autism spectrum. Families are also less
likely to participate in community-based recreational activities due to environmental factors (e.g.,
lack of social peer partners, crowds, noise) and lack of accommodations for the needs of children on
the autism spectrum (Milgramm et al., 2021). Additionally, when families with a child on the autism
spectrum choose to plan an outing, extra preparation and development of alternative plans extend far
beyond what is required for non-autistic peers (Bagby et al., 2012). The need for a child on the
autism spectrum to have a highly structured routine can increase parenting stress in orchestrating
what could be a unique and enjoyable outing for the family (Larson, 2006; Larson & Miller-Bishoff,
2014). Caregivers have reported a lack of appropriately adapted resources as a barrier for their child to
participate in many public spaces, limiting family community participation and engagement (Lim
et al., 2016). Families who regularly avoid going into the community can be at risk for marginaliza-
tion and isolation.

Community participation is a complex process for many families who are managing internal fac-
tors of family members’ needs, as well as external factors of cultural institutions. Cultural institutions
may have innate barriers that may seem insurmountable for families with children on the autism spec-
trum. Common barriers may include: physical (e.g., bathrooms with loud hand dryers, crowded
spaces), communication (e.g., information provided in inaccessible formats, limited information to
prepare for visits), programmatic (e.g., limited flexibility in activities, lack of staff trained in disability
awareness), transportation (e.g., lack of accessible transportation or parking), and financial (Andrews
et al., 2015). Additionally, parents of children on the autism spectrum reported experiencing three
times the amount of negative emotions associated with museums compared to parents with non-
autistic children (Antonetti & Fletcher, 2016).

Stigma is the greatest barrier to participating in community public spaces (Broady et al., 2017;
Kinnear et al., 2016). Families of an autistic child may have concerns about being judged and experi-
ence ongoing discrimination by other other families when in public spaces, which can discourage
them from actively participating (CDC, 2020). Individual accessibility or difficulty finding in quality
programming may compound into insurmountable barriers for a family, keeping them from attend-
ing an institution altogether. Lack of participation in specific institutions that are inaccessible for
families with a child on the autism spectrum may result in decreased engagement in the wider com-
munity. For example, families may avoid cultural institutions due to lack of autism friendly program-
ming or over-stimulating environments such as a small noisy lobby. These challenges can create
barriers for the entire family to attend that institution and cause feelings of isolation from their
community.

To address participation inequities, community businesses and corporate organizations are sup-
porting families with children on the autism spectrum through sensory-friendly events and environ-
mental modifications. For example, restaurant chain Texas Roadhouse hosts sensory-friendly nights
with dimmed lighting, low music volume, sensory-friendly toys, pictures of menu items, and has

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replaced their traditional birthday song with a free dessert (Wisconsin Early Autism Project, 2018).
In addition, multiple movie theater chains host sensory friendly screenings of popular family movies.
While these programs are a step in the right direction, programs are not consistently developed in
collaboration with key stakeholders and often lack specificity or a formal process for determining
what is needed in a specific environment to facilitate participation and ongoing accessibility. Many
children’s museums and other cultural institutions have partnered with local autism organizations
and self-advocates to offer sensory-friendly hours or ASD-specific programming that include struc-
tured programs and encourage families to join the activities. Anecdotally, programs have been noted
as important for supporting families and increasing the feeling of being valued and included in the
community. However, to date, there hasn’t been a process for determining how to make the whole
experience of engagement at the cultural institution, from pre-visit to post-visit, best meet the needs
of families and individuals on the autism spectrum.

A process for determining the specific needs of a cultural institution to increase family participa-
tion and engagement in their communities is essential. The evaluation process should include com-
munity stakeholders (self-advocates, family members, and members of professional organizations)
and provide a structured process for their ongoing input. Currently, there are no methods for institu-
tions to evaluate their own accessibility. The purpose of this project was to collaborate with key stake-
holders to develop a comprehensive set of evaluation tools to assess the accessibility and inclusion of
specific cultural institutions for families with children on the autism spectrum.

METHOD

Project Background

The Madison Children’s Museum received a local grant to expand their visitor accessibility and
inclusion efforts with specific focus on the needs of families with children on the autism spectrum
and/or sensory processing differences. Leveraging their extensive community partnerships, the
museum convened a coalition group of over 40 community stakeholders including, parents, thera-
pists, non-profit leaders, self-advocates, educators, disability rights lawyers and advocates, and
researchers to develop strategies for improving visitor experience and accessibility. The Harwood
Approach was used as a framework to understand what the community needed (The Harwood Insti-
tute, 2019). The coalition set out first to understand the hopes and aspirations of the community,
their challenges, who the community trusts in helping achieve change, and how Madison Children’s
Museum could both change the experience locally but also support change across the entire field.
Over several meetings, the coalition recommended that Madison Children’s Museum introduce sen-
sory friendly events and assess its current institutional strengths and areas of improvement. Subcom-
mittees were formed focusing on evaluation, training, and digital improvement. The goal of the
assessment process was to develop assessment tools to provide ongoing self-evaluation and resources
(Evaluation Toolkit) for other similar cultural institutions to utilize. Areas of assessment for accessi-
bility and inclusion included: 1. staff competency in working with families with children on the

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autism spectrum, 2. the sensory environment of museum spaces, 3. digital resources for families, and
4. the overall visitor experience during specific programs and general admission hours. The assess-
ment and toolkit development process took place over the two phases described below.

Phase 1: Theoretical Model and Accessibility Assessment

A diverse stakeholder team, including museum staff, self-advocates, parents, clinicians, and uni-
versity researchers were identified to lead the assessment process and toolkit development. They
started by reviewing relevant literature related to cultural institutions, ASD, sensory processing, and
participation to guide the project. The process began with defining a theoretical lens to shape the
evaluation process in the museum environment. The model was adapted from Christiansen and
Baum’s (1991) Person-Environment-Occupation-Performance (PEOP) theoretical model
developed in occupational science for occupational therapy practice. The PEOP model provides a
framework for understanding how successful participation (“performance”) in a chosen activity
(“occupation”) occurs as the result of complex interactions between the individual and their environ-
ment. In this model, “person” is understood as an individual with a unique set of strengths and
abilities related to their intrinsic physical, psychological, cognitive, and neurological resources.
“Environment” refers to all elements outside the individual, which provide the context in which an
activity takes place (e.g., physical space, cultural context, social obligations).

The PEOP model was adapted to consider how families with children on the autism spectrum
and with sensory processing differences engage in the activity of visiting a cultural institution. The
adapted model allowed the stakeholder team to consider all the aspects that may influence a child and
family’s participation in complex community spaces such as a museum. In our adapted model devel-
oped for the Evaluation Toolkit (see Figure 1a), we have adapted the “person” category to encompass
a child’s individual abilities and developmental functioning as well as factors within the family system
that may influence engagement in a public environment. We have further adapted the “environment”
category to highlight aspects of the environment, which a public institution such as a museum could
influence or control. The decisions an institution makes regarding its environment have the potential
to increase or decrease a family’s likelihood of successful participation in the environment. For exam-
ple (see Figure 1b), it may be difficult for a child (“person”) with hypersensitivity to noise, to partici-
pate in a children’s museum free play area (“occupation”) during peak visitor hours (“environment”).
The child’s response to these factors is evidenced by the child covering their ears while walking
through the space (“performance”). As a result, the child’s participation in free play and engagement
with the museum is reduced.

With the foundational model as guiding principles, the stakeholder team led by museum staff
then gathered data regarding accessibility to the museum’s spaces and programming. Three areas of
data collection included observations of programming, review of artifacts and materials provided by
the museum staff, and interviews with staff. The information was evaluated by the team and inte-
grated into key areas for cultural institution self-evaluation to be included in the future toolkit. While

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Figure 1. Person-Environment-Occupation-Performance (PEOP) model. (a) The figure portrays a model of how fac-
tors from the families and cultural institution overlap to influence the degree to which a family engages with that
institution. Items near the top are based in the context of culture and items at the bottom are based on attitudes
and behaviors. (b) This figure of the PEOP Model illustrates an example of a child in a museum and how factors
from Person, Environment, Occupation and Performance impact occupational performance of free play in a museum
context. Source: Adapted from original, Christiansen & Baum, 1991, for the Evaluation Toolkit to Increase Accessiblity
and Inclusion for Children with Autism Spectrum Disorder and Sensory Processing Challanges in Public Institutions
(p. 3), Ausderau Research Lab.

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each area was evaluated individually, the integration and review for all three areas was an interactive
and collaborative process to allow the team to utilize findings to inform other areas of inquiry.

Structured observations
Data was gathered through structured observation of various programming with different aims
and structures. Observational data was collected during four sensory events specifically targeted for
children on the autism spectrum, eight museum programs (drop-in, camps, nature, history, technol-
ogy), and general floor observations data. Twelve individual observers documented observations in
short answers, Likert scale questions, and general comments. Observations ranged from 10 to 60-
min increments and incorporated staff engagement with children, child participation, environmental
factors (lighting, noise level, signage), and sensory behaviors. Observation data focused on quality of
interactions, activity structure and demands, sensory and safety concerns related to the physical envi-
ronment, and child sensory responses. In addition, museum patrons were provided the opportunity
to complete a brief feedback form post-attendance.

Artifact and material review

In the second area of assessment, museum artifacts and materials were reviewed to consider how
they may influence participation and accessibility for families attending the museum. At least two
team members individually reviewed the MCM website, employee and volunteer training materials,
pre-visit materials distributed to families, program lesson plans, and sensory resources. Information
was documented on current efforts to promote accessibility, challenges to finding information helpful
to patrons, and identified areas of need to support participation for families with children on the
autism spectrum.

Interviews
In the third area of assessment, interview data was gathered with museum staff. The university
research team conducted interviews with 13 staff members by phone or in-person, which typically
lasted 30–60 min and were transcribed verbatim. The content of the interviews explored how par-
ents, volunteers, staff, and administration were involved and experienced museum events, specific
programs and general activities. Transcripts were reviewed to understand not only staff’s perception
strengths and areas of need for their institution, but more importantly, to determine how to incorpo-
rate staff in creating inclusive cultural spaces for families.

Phase 2: Tool Development and Refinement

Toolkit topics were identified and materials were drafted after using the adapted PEOP model
and integrating findings from the literature review, program observations, artifact/material review,
and interviews. The material development was initiated by the university team but then reviewed,
revised, and adapted based on feedback from the stakeholder team and extended museum staff. Data
collection and refinement of the tools was an iterative process where draft forms were used to collect
data, then reviewed by the research team for the beneficial implementation, edited based on

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feedback, and re-used to gather additional information. The goal of the iterative process was to
develop materials to allow for institutional self-assessment of accessibility, increase the clarity and
institutional utility of toolkit materials, and integrating concerns and ideas of stakeholders. After a
final draft of all toolkit materials were developed, they were piloted in the Madison Children’s
Museum environment to determine the usefulness. Additional revisions with final recommenda-
tions for implementation were integrated into the toolkit, which included the creation of an addi-
tional framework to guide self-assessment called Dimensions of Accessibility. The Dimensions of
Accessibility was developed from a series of conversations between museum staff and stakeholder
collaborators while using self-assessment tools. It emerged during the development process as a
framework that supports collaborators in identifying and discussing barriers and facilitators institu-
tional engagement from multiple perspectives. After the toolkit development and refinement pro-
cess, a discussion with staff was initiated to begin to discuss how the self-assessment findings may be
effectively implemented in various cultural institutions.

RESULTS

The Toolkit to Increase Accessibility and Inclusion for Children on the Autism Spectrum and
with Sensory Processing Differences in Cultural Institutions was created through a collaborative and
iterative process integrating the findings from the observations, artifact/website review, and inter-
views (see supplementary material). The Evaluation Toolkit’s five unique tools were designed to pro-
vide self-assessment for multiple dimensions of cultural institutions ranging from staff knowledge
and training, website/online materials, special events, environmental aspects, and direct child
engagement. Depending on the objectives of the specific tool, methods for data collection include a
range of direct observations, interviews, surveys, and material review.

The Observation of Child Engagement form can be used in multiple environments and types of
programming to better understand how children are interacting with the environment, staff, and
activities. Additional observational data about the logistics if visiting the institution, expectation of
staff education, and family experiences are gathered from patrons with the Event Feedback Form and
the Public Institution Questionnaire. To evaluate pre-visit planning information available, the User-
Friendly Website Review Form rates ease of navigation to important information sought out by fam-
ilies with children on the autism spectrum. Finally, the Staff Survey and Semi-Structured Staff Inter-
view provide a mechanism for institutions to understand their staff strengths, challenges, and
experiences related to accessibility and inclusion for children on the autism spectrum. See Table 1 for
detailed information on each specific tool, it’s purpose, and administration format.

Along with tools within the Evaluation Toolkit, a framework titled, Dimensions of
Accessibility was developed for guiding institutional self-assessment. The framework will guide
institutional staff to further conceptualize barriers and facilitators in key areas of engagement
for families with children on the autism spectrum. In the first two areas, Information and
Economic, institutions are encouraged to consider external factors that impact families’

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Table 1.
Five tools of the evaluation toolkit for accessibility and inclusion self-assessment

Tool Format Administration Purpose

Public 38-questions Any staff or stakeholder Highlight unnoticed patterns or barriers

Institution 5 Categories: Parking, Entrance, (~30 min) within the existing environment
Questionnaire Visitor Resources, Staff, Programs Provides objective information to
contextualize and interpret findings
from other tools
Staff Survey & 15-question multiple choice and For staff to fill out (10– Gain insight into staff perspectives that
Semi- short answer survey 15 min) values a diversity of staff responses
Structured 14–16-question semi-structured Optional face-to-face Addresses the awareness and how the
Staff Interview interview follow up (20–40 min) staff intervene with the children on
the autism spectrum
User-Friendly 31-question form with rating scales Any staff or stakeholder, Evaluate websites from the perspective
Website 2 categories: Language & Content multiple reviewers of a family member with a child on the
Review Form encouraged (~30 min) autism spectrum
*Multiple reviewers and multiple
browsers and devices encouraged
**Not intended as a general evaluation
of website accessibility
Observation of 38-question form with rating Any staff or stakeholder Describe features of the physical and
Child scales, plus notes and examples for specific programs social environment that may support
Engagement 5 Categories: Physical or general activity (30– or hinder participation and current
form Environment, Staff, Children 45 min) strengths and needs
Social Behavior, Children Sensory Key terms with Findings can identify areas of strength
Behavior, Activities definitions provided and need & impact of initiatives
designed to increase accessibility
Event Feedback 40-question survey with multiple Families with children on Gather information from families of
Form choice, short answer, and rating the autism spectrum & children on the autism spectrum and
scales other stakeholders other stakeholders about their
(10 min) experiences with your institution

engagement with the institution and offers ways in which institutions may address potential
barriers keeping families away. The areas of Social and Physiological, address factors that are
more internal to the family and individual and ways in which an institution’s awareness of
these barriers can create opportunity for engagement. The Dimensions of Accessibility Frame-
work encourages institutional self-reflection to identify specific details as well as systemic
influences. The rows of the framework require specificity to identify barriers and facilitators
unique to the institution, and the columns help organize that information to better under-
stand the broader social and cultural influences. Utilizing this framework in concert with data
collected from the Evaluation Toolkit can help institutions identify specific barriers within
their institution and possible facilitators to increase engagement for families of children on
the autism spectrum. See Table 2 for detailed information on the Dimensions of Accessibility
Framework.

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DISCUSSION

Increasing accessibility for children on the autism spectrum and their families in public cultural
spaces, such as museums, is essential to support a diverse population of children to engage in the vast
benefits of cultural spaces. With stakeholders as key members of an iterative process, an Evaluation
Toolkit with five unique assessment forms was developed to begin to address this need. A self-
reflective process incorporates multiple dimensions of the institutional context by addressing public
experience, staff perspectives and competency, website ease of use, observation of program accessibil-
ity, and event experience feedback. Data collection with the tools and the prosses of self-evaluation is
most effectively utilized in partnership with stakeholder collaborators, the users of the institution
who are families and caregivers of children on the autism spectrum. The integration of stakeholders
allows for individualization of materials to unique institutions and better interpretation of findings
that are meaningful to the institution users. The Evaluation Toolkit creates a preliminary framework
for cultural institutions to broadly assess their strengths and areas of need when supporting families
with children on the autism spectrum.

The adapted PEOP model provides a lens to better assess how meaningful participation may
occur in complex cultural institution environments. Together, a family’s personal factors and an insti-
tution’s environmental factors help to measure the degree of interest and ability a family may have
leading to participation in a particular public institution. Other institutions examining participation
have noted similar personal and institutional factors impacting engagement for patrons on the autism

Table 2.
Dimensions of accessibility as a framework for guiding institutional self-assessment

Information Economic Social Physiological

Dimensions of Website advertisements, Transportation, food, Diversity, attitudes, Sensory, physical and
accessibility printed material, language and admission cost and behaviors social environment
Barriers Missing details:
●Low socio-economic ●Lack of feeling ●Lights and sounds
●List of accommodations status accepted ●Anxiety
●Services available ●Family work schedules ●Expectations of ●Decreased focus
●Pricing options ●Traditional social normativity ●Impulsivity
●Diverse representation institutional hours ●Decreased staff ●Social stress
●High food cost knowledge
●Limited parking ●Attitudes of other
options guests
Facilitators
●Stakeholder input ●Discounted admission ●Welcoming and ●Quiet rooms
●ADA compliant web design fees educated staff ●Sensory regulating
●Staff education ●Refund availability ●Diverse opportunities
●Accessible materials ●Expanded institutional representation ●Child autonomy in
●Clear services and policies hours ●Inclusive policies activity choice
●Supports for siblings ●Clear ●Developmental
●Incentives communication flexibility in activities

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spectrum, although may not have had a foundational model. At the Canada Science and Technology
Museum suggestions were made to improve engagement in the museum based on the experiences of
four autistic children and one autistic adult (Hoskin et al., 2020). Recommendations included both
environmental factors targeted at family and support persons (improved environmental navigation
and pre-planning website use) and an individual’s sensory regulation (Hoskin et al., 2020). In the
case of the Canadian Science and Technology Museum as well as our children’s museum partner,
increased access for planning and getting to the museum and individualized supports for engaging in
the space are necessary. By addressing factors of intrinsic concern to the family and factors influenced
by the cultural institution simultaneously, the opportunity for both interest and ability to engage in
the institution increases, making it more likely for the family to participate in a meaningful way. The
multiplicity of needs to consider highlights the need for cultural institutions to have a way to assess
their unique institutional factors to increase accessibility for families with children on the autism
spectrum. Using the Evaluation Toolkit to gather institution-specific data and having the Dimen-
sions of Accessibility framework to guide discussions about facilitators and barriers for families at
their institution, cultural institutions can conduct meaningful self-assessment that can lead to spe-
cific, plausible change to improve accessibility. An important value of this work brought to light by
this work is the value of stakeholder engagement in the process of evaluating accessibility.

Stakeholders from across many sectors and disciplines that had deep commitment and input
were essential for the development of the Evaluation Toolkit, including appropriate concerns as well
as the overall development process. In partnership with Madison Children’s Museum, self-
advocates, family members, and organization leaders deeply connected with the autism community
were involved in the planning, execution, and dissemination of the toolkit development process, pro-
viding key insight to their experiences. In a framework of stakeholder engagement, Goodman and
Sanders Thompson (2017) identified three levels of stakeholder engagement: non-participation,
symbolic participation, and engaged participation. While often ultimate end users may receive out-
reach or education, or symbolically serve on an advisory board, engaged participation requires collab-
oration and outcomes that are mutually beneficial to all partners. The development of the Dimension
of Accessibility framework arose from a need for stakeholders and museum staff to have shared lan-
guage to discuss challenges and successes related to institutional accessibility that was meaningful to
everyone ranging from the family bringing their autistic child on an afternoon outing to the museum
staff who develop exhibits and programming. Having a coalition of diverse stakeholders from begin-
ning to end in the development of the Evaluation Toolkit has created deep conversation between
parties involved on the meaning, use, and outcomes of the tools to address the real need and realities
of everyone involved.

Generally, there is movement toward inclusion of stakeholders to drive autism research (Roche
et al., 2021). Additionally, stakeholder engagement on topics such as autism and technology provide
evidence of the value of co-construction of research agendas that reflect the needs and values of autis-
tic people (Parsons et al., 2020). In the partnerships established around the Evaluation Toolkit the
co-construction of objectives and desired outcomes provided key benchmarks for the progress of the
toolkit, but also established a wider conversation about inclusion. In the context of cultural

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institutions, museums have found that stakeholder engagement collaborations around specific pro-
jects have improved experiences for autistic individuals and increased skills and understanding for
staff resulting in mutually beneficial outcomes (Cho & Jolley, 2016; Theriault & Jones, 2018).
Unfortunately, collaborations are often project specific and small in scope and may offer opportunity
for the conversations to extend to the wider accessibility of an institution.

To address institutional access and accessibility, an important aspect of the stakeholder engage-
ment in the Evaluation Toolkit development process was negotiating the needs of children and fami-
lies on the autism spectrum and the institution simultaneously. Cultural institutions have their own
mission and objectives that at times may not necessarily align with common strategies to support chil-
dren on the autism spectrum. For example, the underlying philosophy of some cultural institutions,
such as a children’s museum, often supports free play and aims to create spaces for infinite creative
opportunities. However, children on the autism spectrum often benefit from structure, visual cues,
and scaffolding (Escolano-Perez et al., 2019; Rutherford et al., 2020). Finding ways to negotiate
these intersections to continue to support families and children on the autism spectrum while also
respecting core institutional values is essential. By integrating stakeholders into the Evaluation
Toolkit development process, the team developed tools that provide the opportunity to recognize the
needs of both individuals and the institution through a variety of tools with different formats and
aims. The Evaluation Toolkit systematically captures diverse data for the evaluation process allowing
for integration of information to facilitate meaningful solutions for both groups. Rooted in the values
of true stakeholder engagement, children on the autism spectrum, their families and support commu-
nity, and cultural institutions employing the Evaluation Toolkit are valued in this process as key
stakeholders for which the outcomes will be mutually beneficial.

LIMITATIONS AND FUTURE DIRECTIONS

The Toolkit to Increase Accessibility and Inclusion for Children on the Autism Spectrum and
with Sensory Processing Differences in Cultural Institutions is a first step in creating a systematic
process for evaluation of an institution’s strengths and areas of need. However, the toolkit was devel-
oped with a stakeholder team primarily associated with a local children’s museum. Future work
should include implementation in diverse family-centered institutions (e.g., science center or art
museum) across geographical locations to further assess the Evaluation Toolkit’s contextual effec-
tiveness and applicability. The Toolkit could also be relevant and applicable to other disability popu-
lations across the lifespan. However, it would be important to consider which stakeholder
communities would be involved in the adaption of the Toolkit to best meet the unique needs of this
population in varying cultural institutions. In addition, while institutional needs and strengths may
be identified with pathways for potential adaptations for use for families with children on the autism
spectrum, the Evaluation Toolkit does not provide pragmatic strategies for implementation. Cultural
institutions will need to work with local experts, including families and children on the autism spec-
trum, to develop institution specific strategies and staff training to address their unique needs for
increasing local access and inclusion for families with children on the autism spectrum. A collective

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community of practice to consider best possible ways of implementing change and then assessing
community-based evaluation for effectiveness will be essential.

CONCLUSION

Families with children on the autism spectrum deserve the opportunity to enjoy the benefits of
attending and participating in cultural institutions. Inherent barriers of institutions and their design
can make that challenging or even impossible to occur. The Toolkit to Increase Accessibility and
Inclusion for Children on the Autism Spectrum and with Sensory Processing Differences in Cultural
Institutions provides an opportunity for institutional self-assessment to address their weaknesses and
continue to learn from their strengths to increase their accessibility. The five tools and Dimensions of
Accessibility framework emphasize and support the need for institutions to work with stakeholder
collaborators in this process. By taking the opportunity for a comprehensive examination of the cul-
tural institution’s environment, programs, and staff, cultural institutions can begin to better meet the
needs of families and children on the autism spectrum to facilitate meaningful engagement. The
Evaluation Toolkit can be used broadly across many types of institutions and data collected in the
self-assessment process can lead to proactive development of public spaces, institutions, and pro-
gramming that is accessible and inclusive of diverse groups of people, beyond families with children
on the autism spectrum.

FUNDING

This study was supported in part by a core grant to the Waisman Center from the Eunice Ken-
nedy Shriver National Institute of Child Health and Human Development (U54 HD090256). END

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