key: cord-0297458-mlpvhe6x
authors: Gunter, Chris; Sinha, Cynthia B; Jaquess, David
title: Participation in a Science Festival Promotes Inclusive Science Communication around Autism Spectrum Disorder
date: 2021-01-05
journal: bioRxiv
DOI: 10.1101/2021.01.04.425324
sha: 7b5d4c05a9086f9fb8ecf12d488d1c0cb19eb07d
doc_id: 297458
cord_uid: mlpvhe6x

As a high prevalence disorder with limited information about etiology, autism spectrum disorder (ASD) has been marked by confusion and miscommunication around its causes and treatments. To promote high-quality science communication, we participated in a local science festival, both providing information about the brain and ASD and asking passersby questions about their knowledge of ASD. We then asked the booth staffers to evaluate the program and conducted qualitative analyses of public and staffer responses. Public responses to the question “what would you like to know about autism?” most often concerned how the disorder was diagnosed or defined. In contrast, public responses to the question “what would you like others to know about autism?” centered around educating those unaffected by ASD on how to improve interactions and awareness, mentioning inclusivity and intersectionality, and dispelling negative stereotypes. The staffers overwhelmingly reported that in future years, they would include even more science and allow for more in-depth conversations with interested parties, as well as bringing materials in other languages. These responses are in keeping with a trend for more inclusive science communication, particularly in the field of behavioral health and ASD, and a desire to challenge myths around the condition. We conclude that our science festival interactions brought multiple benefits to public and staff.

Autism spectrum disorder, as defined in the Diagnostic and Statistical Manual of Mental Disorder, 35

Fifth Edition is a neurodevelopmental disorder with key features reflecting impairment in social 36

interactions (e.g., reciprocal communication and social interaction) and difficulties arising from 37 overly circumscribed or repetitive interests, activities and/or behaviors (1). These disorders are 38 present from very early in life, and they range in a spectrum of severity from mild (reflected in 39 persistent difficulties with perspective taking and comprehending affective components of human 40 relations) to very severe (complete withdrawal from social interaction and lack of awareness of 41 socially mediated features of the environment). The recent epidemiological estimate of prevalence 42 from the Centers for Disease Control and Prevention (CDC) are 1 in 54 children overall, with the rate 43 being four times higher in males than in females (2). Age of diagnosis is crucial to receiving early 44 treatment and affecting the trajectory of the condition; given the behavioral nature of ASD, 45 symptoms do change over the lifespan and as a result some percentage of children may move 46

above and below diagnostic thresholds over time (3). 47

In studying the apparent physical underpinnings of ASD, the scientific community has struggled to 48 provide a complete explanation of etiology. Although some estimates point to genetics to account 49

for up to 80% of phenotypic variance (4), the full developmental dynamic for ASD remains to be 50 discerned. This combination of a high prevalence disorder with limited information about etiology 51 creates a dynamic in which misinformation about etiology and treatment of the condition is 52 rampant. While searches for the word "autism" on the internet yield hundreds of millions of hits, 53 the quality of information varies widely and can influence, for example, the opinions of parents on 54 accepting a diagnosis (5) or health policy makers setting standards for coverage of autism treatment 55

(6). Healthcare consumers (as well as providers) often struggle to sort through the overwhelming 56

volume of information to land on an empirically-informed vantage point (6,7). In sum, these are 57 relatively common disorders for which we have limited scientific understanding of etiology, but for 58 which there are effective assessments and empirically supported interventions that offer promising 59 outcomes. 60

Public awareness, understanding, and discussion of ASD has changed substantially in the last 20 61

years, in part due to the sharp rise in number of diagnoses (8) and in part due to the rise in 62 pseudoscience such as rumored links between vaccines and ASD (9). Given the 1 in 58 reported 63 national prevalence for children meeting diagnostic criteria (10), and the increasing depiction of 64 ASD in the media, it is very likely that most people in the US know someone or know of someone 65

with ASD. Self-advocates have played an important role in changing the conversation as well, by 66 describing their experiences and advocating for a shift from "autism awareness" to "autism 67 acceptance," for example (11). An emerging view in the advocate community is to shift from 68 labeling ASD a "disorder" and instead to view it as part of a spectrum or even a circular rainbow of 69 diverse brain functioning (12, 13) . This is in keeping with drives for inclusion and recognition of 70 diversity in other communities. 71

Research suggests that these disorders are present across demographic characteristics; however, 72

they are detected at differing rates across gender, race ethnicity, and SES. This additional element in the landscape of ASD research and communication is a dynamic of racial 83 disparity in access to care and related delayed diagnosis and intervention is consistent with the 84 concept of intersectionality in diversity-differences within differences that make a difference (18).

Within any movement for equality and social justice, it is not uncommon for there to be blind spots 86

to the differences within a recognized group. As a result, individuals whose identities fall at the 87 intersection of classes seem to encounter doubly disparate access to care. To address these 88

intersections, networks of self-advocates living on the autism spectrum have created alliances with 89 disability-rights groups, LGBTQ alliances, and other movements for social justice and representation 90 (19). 91

As the view of ASD has changed over time, so has the need for providers and scientists to 92 communicate findings and recommendations around ASD. For example, erroneous reports of 93 vaccine-autism links have taken up significant energy and sowed confusion around causes of ASD, 94

although sites such as Vaccines Today are now providing high quality online communication and 95

vaccine information (20) . Smaller qualitative studies (21) have described a journey of progressive 96 engagement with science for the parents of children diagnosed with ASD, whether to seek out 97 explanations to help them understand the condition or to seek appropriate/better services for their 98 children. A larger study in the US (22) comparing beliefs and understanding of parents and scientists 99 regarding ASD reported that there was significant discordance between parents and scientists on 100 their beliefs about causes of ASD and research priorities. In partial contrast, a large European study 101

(23) found that the autism community surveyed was generally supportive of autism research, 102 recommending that community perspectives be continually surveyed and considered in the design 103 of research studies, including the use of preferred terminology such as "at-risk" infants. We believe 104 that successful communication with families seeking information about ASD must include 105

interactive and inclusive messages and activities, welcoming multiple perspectives and tailoring 106

itself to formal or informal settings, and therefore designed our public engagement activity 107

accordingly. This may involve intentional inclusion of words or other documentation of views from 108 families that include a person with ASD, such as families from racial or ethnic backgrounds other 109 than the dominant culture (e.g., Latinx, African-American, recent immigrant, east-Asian, Indian); 110

families including parents and caregivers of many family structures; and people living on the autism 111 spectrum of differing genders, ages, and/or races. Luisi, Rodgers and Schultz (24) argued that 112 science communication requires training opportunities, which should include experiential learning, 113

and they pointed out that this type of training begs a framework for program evaluation. 114

Given our desire to communicate high-quality scientific information about ASD, we included 115 participation in multiple public events in the Dissemination and Outreach Core for our NIH-Funded 116

Autism Center of Excellence grant (NIMH 2P50 MH100029). Specifically, we sought to engage with 117 members of the public at a public science event, the Atlanta Science Festival, which closes with an 118 "Exploration Expo" attracting up to 30,000 people. Science festivals are becoming a more common 119 method for interaction with the public, including in areas of controversial science (25), and can be a 120

valuable tool for evaluating public engagement with scientific topics. Our booth, entitled "How Does 121

Your Brain Talk?", offered both scientific information and a chance for passersby to answer specific 122 questions about possible knowledge gaps regarding ASD. The booth also included a visual exemplar 123 of brain development in the form of an animated portrayal of brain development research findings. 124

Such exemplars have been found to increase the impact of science communications about autism to 125 the general public (26). The booth was staffed by science trainees and junior faculty members who 126 had been communicating with the public for months in the context of tours of Marcus Autism 127

Center and were provided a one-hour seminar on how to approach the public, how to anticipate 128 and respond to "hot topics" that might reflect misinformation, and how to communicate key pieces 129 of information pertinent to the booth. To assess the experiential training aspect of working in the 130 booth, we asked questions of the individuals staffing the booth about their experience and its 131 anticipated impact on future science communication activities. As noted by Patton (27), a 132 qualitative analysis using a theme analysis is a common first step in program evaluation. We used 133 this type of analysis to evaluate the feedback from both groups of stakeholders: the attendees and 134 the booth staffers. 135

The authors reviewed the purpose, design, execution and use of this project and determined that it 137 fit the definition of Program Evaluation as stipulated by Emory University 138

(http://www.irb.emory.edu/forms/review/programeval.html). The Emory University IRB's Non-139

Human Subjects Research Determination Electronic Form agreed that this project was exempt from 140 review by the university's Institutional Review Board. 141

Terminology 143

In the larger community related to autism spectrum disorders, we see the terms autism and ASD 144 both used frequently. We also see "people with autism/ASD" and "autistic people" used and would 145 generally defer to the choice of the person involved. In this article, we will use all four of these 146

terms. the mock scanner), they would be shown a rotating brain image on a monitor, depicting the wiring 156

of circuits in the brain as found through neuroimaging studies at our Center. At the front of the 157 booth were flip charts as described below. 158

Data were collected to evaluate two aspects of the community outreach event. The first question of 160

what type of information would fit the needs of the audience at the event was evaluated by asking 161 two questions. 162 The questionnaire was distributed via email eight days after the event, and one follow-up email 181

prompt was sent to those who had not responded after seven days. We did this anonymously and 182

coding was not able to match respondent to response. 183

Responses from the event were analyzed using content analysis approach. This analytic approach 185 facilitated the conceptual organization of the attendee responses (28). Content analysis utilizes 186 deductive or inductive coding. The former coding technique purposefully codes for established set 187 of words, phrases, or concepts (29). Inductive coding develops concepts from the responses without 188 establishing codes a priori (29), and therefore was used for this evaluation. Once conceptual coding 189 was completed, patterns were identified, and the concepts were grouped into meaningful 190

categories. Frequently, content analysis involves quantifying coding categories and may retain only 191 the most prevalent (29). For this evaluation, all responses were retained for the final analysis. The 192

lead coder (CBS) developed the coding concepts and initial categories. For inter-coder reliability, a 193 second and third coder reviewed coding concepts and edited organization of the categories for 194 clarity. Consensus was reached for the final analysis. Given our small data set, we did not believe 195 utilizing a statistical measure for reliability was appropriate; our aim was 100% agreement. 196

As an additional means of analyzing themes in the responses from attendees, we analyzed the text 197 of the public responses using the Semantic Word Clouds Visualization tool (30,31). We produced 198 two separate visualizations: first ( Figures 1A and 2A) , we applied a simple layout of sorting by rank. 199

Number of words was set at 50. Similarity was determined by the cosine coefficient, ranking was by 200 term frequency, sizing was 4:3, and color was black. Second ( Figures 1B and 2B) , we used the layout 201 settings for the seam carving algorithm, which determines an image based on semantic 202

relationships and then minimizes the number of empty spaces between groups of words (31). 203

Number of words was set at 100. Similarity was also determined by the cosine coefficient, ranking 204 was by term frequency, sizing was 4:3, and color was ColorBrewer 2. In all figures, stop words and 205 numbers were removed, similar words were grouped, and the shortest word was set at three 206 letters. 207

Approximately 150 attendees engaged with the booth during the event; 27 responses were 209 collected for Question 1 and 30 were collected for Question 2. The median length of response was 210 eight and nine words for Question 1 and Question 2 respectively. Attendees appeared to include 211 diversity in ages, gender, ethnic origin, and relationship to ASD; in discussion with the booth 212 staffers, attendees reported themselves to be from multiple professions and family situations. 213

Many passersby saw the name of the booth sponsor (Marcus Autism Center) and stopped by 214

specifically to tell us about their family member, student, patient, or friend with ASD. A few 215

individuals specifically self-identified as having ASD. Therefore, it is clear that from the general 216 audience who self-selected by attending a science festival, our evaluation participants represent a 217 subset with a much higher likelihood of interest in or personal relationship to ASD science. 218

Inductive content analysis of the attendees' responses to our questions revealed several prominent 219 themes. Overall, for Question 1, people appeared to be most interested in learning how ASD is 220 diagnosed or defined. There were also multiple questions about causes for ASD, including 221 environmental factors (but not including vaccines). Finally, specific treatment questions were 222 raised, including service locations in the area, transitioning from childhood to adulthood and 223 beyond, and diet or counseling requests. 224

For Question 2, the responses centered around educating those unaffected by ASD on how to 225 improve interactions and awareness and dispelling negative stereotypes. Specific advice on how to 226 treat them in the emergency room, for example, was mixed in with general advice such as "They 227 want to interact but it's harder for them!" Many of the statements mentioned positive 228 characteristics like creativity, intelligence, and even "the most sweet and thoughtful people you will 229

have the pleasure of knowing." To combat negative labels, attendees mentioned specifically "it's 230 not a disease" and "autism does not define a person." We also saw comments that seemed to 231 reflect an intersectionality of marginalized experiences, e.g. "Black autistic folk exist too," and 232 multiple reminders of inclusivity, e.g. "It is not a disease, just a different way of thinking." These 233 responses appeared to have been provided by attendees who were on the autism spectrum or 234 those that had experienced autism in their families, offering support for a subjective experience of 235 intersectional barriers to societal inclusivity or to access of medical care. 236

The graphic (word cloud) analysis of responses from program attendees two the two informational 237

questions suggested additional thematic trends. Figures 1 and 2 represent these responses in word 238

clouds, using different analysis methods. placing related words near each other and sizing each word based on its frequency in the answers.

For Question 1 about what attendees would like to know, the common themes primarily centered 258 around defining and describing the disorder (diagnosis, brain, problems, nervous, detect, problems, 259 start) with a clear thread of words humanizing the condition (children, kids, people, age, older 260

[individuals]; Figure 1 ). With regards to Question 2, the common themes include issues of increased 261 awareness qualities of individuals with autism (many, look, smart, different, kids, Black), challenges 262 related to the condition (sensitivities, eat, wear, trying, interact), and areas of dialogue on how to 263 characterize the condition (disease, disorder, different; Figure 2) . 264

All seven of the staffers responded with extensive information on the program evaluation 265 questionnaire, with a median response length of 63 words per question, overall. The comments 266 from the staffers reflected some of those from the attendees, including motivation to learn more 267 about ASD themselves, and to bring more awareness about ASD to the community. A number 268 expressed surprise at the intense level of interest in the science around ASD (and the enthusiasm of 269 children for trying out the mock MRI scanner), but confirmed that as scientists, they enjoyed 270 translating their scientific work and learning about the concerns and questions of those interested 271

in ASD but not working in a scientific setting. They reported changing their approach for science 272 communication based on the individual, sometimes focusing just on the brain and other times more 273 on ASD. 274

The staffers also made specific suggestions about the booth layout: more space was needed 275 because it became crowded at peak times, and a more sophisticated MRI scanner would be optimal.

There was some disagreement at the Festival about whether it is best to reach out to people 277 walking by instead of waiting for them to approach the booth, but in their responses, multiple 278

staffers said the next booth should feature more engaging activities or visuals, and the team should 279

plan to engage all passersby, perhaps with a short script. In keeping with an inclusive approach, one 280 staffer specifically asked for some items in Spanish to be created for the next time, because "I had a 281 few families come up to me who only spoke Spanish. I was able to translate for them, but they 282

wanted materials to take home with them and I would've loved to have provided them with 283 materials in Spanish." Clearly, the prominent desire for next year was to include even more science 284

and allow for more in-depth conversations with interested parties. 285

From the responses to our Question 1, "What would you like to know about autism," the responses 287 most often included questions on how ASD is diagnosed or defined. This result is likely to be 288 affected by the theme of the booth, as it is related to a larger project to detect and diagnose ASD at 289 earlier ages, and therefore this theme was much more likely to be mentioned by the staffers 290

interacting with those entering the booth and interacting with them. In addition, we saw multiple 291

questions about the specifics of ASD symptoms and manifestations, whether behavioral, cognitive, 292 or social. These themes are likely influenced by the personal relationships many of our general-293

public attendees disclosed, including as a teacher or nurse, for example. Family members of people 294

with autism were more likely to ask specific treatment queries, such as "Where can older children 295 get services in Atlanta, my daughter was diagnosed at age 13." 296

Overall, the responses we received when we asked what people wanted to know about ASD reflect 297 larger questions in the community as a whole, based on our experiences interacting with the 298 community for multiple years as a researcher (CG) and clinician (DJ We did not record any questions about vaccines, and none were written on the flip-chart boards or 304

Post-It notes. This suggests that either attendees asked those questions directly to booth staff (and 305

would have been told that there is no link between vaccines and autism), and/or that the public 306 who stopped by did not have this question or did not want to put it into writing. 307

For Question 2, on what others should know about autism, we saw many more references to 308 inclusivity and the more personal side of the condition. Overwhelmingly, respondents want to teach 309 those who are unaffected on appropriate ways to interact with individuals with ASD. This included 310 advice on patience and not "taking things personally," as well as specifics like "think twice before 311 wearing cologne/perfume" due to sensory sensitivities. Respondents wanted to share the positive 312 attributes of people they knew with ASD and counter the idea that autism and intellectual disability 313 are conflated (four comments specifically mentioned that people with autism are "smart" or that 314 they "aren't necessarily intellectually disabled!"). 315

Individuality of people with ASD was a prominent theme as well, echoing themes we have heard 316 from self-advocates for years like "Not all kids with autism look the same." Simultaneously, there 317

was also a theme of request for inclusion, such as "We exist too," "We're not that different," and 318 "Many people with autism are lonely….Can be good friends!" 319

Finally, we heard about the intersectionality of ASD with the experience of being a minority, from 320 comments like "Black autistic folk exist too." We grouped this into a theme with requests for 321

"seeing" the autistic person, including other statements like "Just because they don't 'look' autistic 322

doesn't mean they aren't." 323

We conclude from our content analyses that the science festival brought multiple benefits to our 324 efforts to communicate with the public. At the same time, there is clearly value to the ASD 325 community in seeing themselves represented at such an event. Some self-identified autistic 326

individuals stayed for in-depth conversations and shared their experiences with us. Our staffers 327

reported they enjoyed learning from those with ASD too, and that they would use the experience to 328

shape future research and future interactions. In addition, their responses did seem to reflect 329 growth in science communication through expanded knowledge of public need and increased 330

repertoire for engaging with them. The greater variety of hands-on activities in the booth suggested 331 by staffers could function as multiple visual exemplars and thus support increased learning for 332 attendees (26). In future festival booths, we would also like to recruit some staffers or volunteers 333 who identify as being autistic themselves. 334

The primary limitation of this work is the difficulty in generalization from our findings, given its 335 nature as an evaluation of a one-time event. This evaluation may also provide guidance for future 336 research in this area. Data collection could be expanded either by repeating the same event as we 337 had planned to do (unfortunately, the 2020 Atlanta Science Festival was canceled due to the 338 coronavirus pandemic) or repeating this setup at another festival to increase the sample size. These 339 added events would allow a more refined analysis of responses and possible exploration of issues 340 related to intersectionality. Researchers might need to gather data from multiple events or in 341 multiple locations within a science fair to achieve this goal. Based on the themes derived from the 342 present evaluation, future research could formalize a set of information to be communicated to 343 meet the needs identified here; such studies should include a measure of efficacy in getting the 344 message across to members of the public. It also could be informative to include different methods 345 of communication (perhaps including different language translations) within a single event in order 346

to compare the efficacy of those methods. In addition, designing a study that gathered contact 347 information would allow researchers to follow-up and gather data about the durability of 348 information communicated to attendees. Each of these directions could further expand our 349 understanding of effective science communication. 350

The authors declare that the research was conducted in the absence of any commercial or financial 352

relationships that could be construed as a potential conflict of interest. 353

American Psychiatric Association: Diagnostic and Statistical 369 Manual of Mental Disorders Fifth Edition

Prevalence of 371 autism spectrum disorder among children aged 8 Years-Autism and developmental 372 disabilities monitoring network, 11 Sites

Diagnostic stability in 375 young children at risk for autism spectrum disorder: a baby siblings research consortium 376 study

Association of Genetic 378 and Environmental Factors With Autism in a 5-Country Cohort

The Internet's Effect on Parental Trust 381 in Pediatrician Diagnosis of Autism and Likelihood of Seeking a Second Opinion

Fake News

Evaluation of a template 386 for countering misinformation-Real-world Autism treatment myth debunking. Webster AA, 387 editor

Explaining the Increase in the Prevalence of Autism 389 Spectrum Disorders

Autism Occurrence by 391 MMR Vaccine Status Among US Children With Older Siblings With and Without Autism. 392 JAMA

Disabilities Monitoring Network, 11 Sites, United States

Autism Acceptance Day & Month: Do This, Not That [Internet]. THINKING 398 PERSON'S GUIDE TO AUTISM

Seeing the spectrum entire

The Legacy of Autism and How to Think Smarter About People Who 403 Think Differently

A Multiyear National Profile of Racial Disparity in Autism 405 Identification

Autism Disparities: A Systematic Review and Meta-Ethnography of 407 Qualitative Research

Unmet Need for Therapy Among Children with Autism 409 Spectrum Disorder: Results from the

Autism spectrum disorder: advances in diagnosis and evaluation

The origin of the term 'intersectionality

Does Neurodiversity Have a Future?

Lessons from an 420 online vaccine communication project. Vaccine

Making sense of autism: Progressive engagement with science among parents 422 of young, recently diagnosed autistic children

Attitudes of the autism community to early autism research

Experientially learning how to communicate science 429 effectively: A case study on decoding science

Engaging the Public at a Science 431 Festival

The Power of a Picture: Overcoming 433

Scientific Misinformation by Communicating Weight-of-Evidence Information with Visual 434 Exemplars

Qualitative Research & Evaluation Methods: Integrating Theory and Practice

Content analysis and thematic analysis: Implications for 438 conducting a qualitative descriptive study

Semantic Word Cloud Visualization -Description

Experimental comparison of semantic word clouds

We thank all of the attendees at our Atlanta Science Festival exhibit, the Festival organizers, and the 364 volunteers at the exhibit: Aiden Ford, Skai Glasser, Emma Goldman, Cheryl Klaiman, Longchuan Li, 365Sarah Markert, Adriana Mendez, Jack Olmstead, Tristan Ponzo, and Sarah Shultz. CG also thanks the 366Fondation Brocher. 367