Culture and Autism Spectrum Disorder

Bernadette Kilo

Culture plays a significant role in shaping the understanding of autism spectrum disorder (ASD) among clinicians, caregivers, educators, religious leaders and other community leaders. This impact is multifaceted, affecting perceptions, diagnoses, support systems, and the ways in which interventions are developed and delivered. The purpose of this session is to outline a few critical factors impacting how the cultural backgrounds of caregivers and community interact with those clinical professionals, ultimately impacting autism identification and service delivery.

ACE participants will review: (a) emerging research and case studies on how the cultural backgrounds of clinicians and patients interact to impact clarity of diagnosis or preferences for treatment options; (b) how caregiver and community cultural backgrounds may serve as facilitators or barriers to early identification and treatment receipt due to factors such as mental health stigma; (c) the particular role of extended family members in facilitating or impeding identification and/or intervention/treatment receipt; (d) how community leaders can facilitate understanding and awareness leading to effective systems engagement and more clinicians who are more capable of serving community members; and (e) misinformation and stereotypes perpetuated by media.

This connects to the theme of “Cultural Perspectives Leading to Impactful Practices” by addressing how the cultural backgrounds of individuals and communities complexly align to effectively facilitate or impede the identification and intervention/treatment of individuals with autism.

Processes and Pivots Launching a Community-Guided Autism Resource as an Advisory Board

Nicole Hendrix, Erin Maurer, Susan Perdue, Katherine Pickard, Cidjah Rodney-Somersall

Seeking an autism diagnosis is an overwhelming process, marked by long wait times, provider dismissal of family concerns, and misdiagnoses. These challenges are exacerbated by numerous and varied family and child level factors, resulting in the need for multiple voices informing systems development and engagement ... This session reports on a community advisory board that brings together insights from autistic adults and caregivers of autistic children, alongside interdisciplinary providers, administrators, and researchers to improve systems of care, how to access supports, and connecting with families of autistic children. The purpose of this session is to: review how this team applied for a national level community grant to support the design refinement of accessible information on autism and service access within the state of Georgia. ACE participants will learn: (a) practical considerations when embarking on dissemination goals as a community advisory board or academic-community partnership, (b) to identify key elements of a community-engaged process for identifying community needs and then designing a product based upon these needs, (c) about obstacles encountered by the advisory board in executing grant deliverables and how the board responded to obstacles. This connects to the theme of “Cultural Perspectives Leading to Impactful Practices” because our advisory board represents persons’ of varied and intersectional cultural identities across individual, community, and professional levels. Thus, the grant processes required navigating the perspectives of individuals with different language, literacy, and neurodiverse perspectives, resulting in a product that met their unique values.

FILM Viewing: Navigating Autism in Communities of Color

Jennifer Singh

Navigating Autism in Communities of Color is based on the stories of six Black families, as well as experts in the field, on the unique struggles of navigating autism in a structurally unequal society and determination for equal access. In collaboration between the School of History and Sociology and the School of Literature Media and Communication at Georgia Tech, and The Color of Autism Foundation, Navigating Autism offers a first-hand account of the challenges and hopes for a future that embraces autism in Black communities.

Interdisciplinary Autism Identification: Merging Public and Allied Health Research Cultures

Brian Barger, Abeera Rehmani, Katherin Reuben, Awo Mirreh, Allison Schwartz, Rachel Eloy, Lexi Edwards

When it comes to autism research, public health professionals have an incredibly challenging task: Identifying best practices while interpreting and translating a vast interdisciplinary literature. Historically, discussions between public health autism researchers were primarily in the domain of “allied health professionals.” In recent years, other groups have begun to inform autism screening research, including self-advocates, methodologists/statisticians, and health systems researchers. Each discipline brings its own “culture of best practices” in methods and designs, including what is considered “quality” evidence. This presentation will review student research on early autism identification from public health community-based “systems” and measurement-based scale development perspectives.

ACE audience members will gain greater insights into the impact and perspectives of multiple disciplines regarding “high-quality” evidence, primarily focusing on public health’s role in vetting the literature to apply best practices. This session includes presentation on a/n: (a) flexible framework for determining the type of literature one is assessing and identifying tools to assess the methods according the particular discipline’s standards; (b) applied implications of analytic decisions when developing new screening scales, (c) review of cur-rent practices in translating autism screening tools, (d) a study developed by a self-advocate with on developing a screening tool helping clinicians distinguish autism from trauma, and (e) department of public health autism early identification initiative.

This connects to the theme of “Cultural Perspectives Leading to Impactful Practices” by outlining and defining major disciplines engaged in early autism identification research and variation in their definitions of “good” evidence. This session will interest anyone interested in evidence evaluation undergirding autism identification services.

The Need for Latine Community and Care: ABEJAS™ Path in Autism Accessibility for Spanish-Speaking Latine Families

Alexa Gonzalez Laca, Selena Valladares Ortiz, Katherine Pickard, Karen Guerra

Language-based interpretations of autistic behaviors are central to clinical screening and assessment tools. When measuring autism traits in non-English-speaking contexts, most allied health professionals translate established English screening and assessment tools into other languages using an approach called back translation. However, linguists have noted for decades that this method leads to mistranslations of social-emotional words and phrases. This presentation will discuss the multiple challenges involved in translating screening and assessment tools from one language/cultural group into different languages.

ACE audience members will gain greater insight into the practical impacts of translation decisions with insights from a linguist, a bilingual speech-language pathologist, and a former Peace Corps volunteer and current autism researcher. This session includes discussions on: (a) how cultural and linguistic mis/translation is impacted by culturally variable definitions of “typical” behaviors, the importance of considering the individual in context of community, and variance in child-rearing activities; (b) how translation decisions by experts can mask culturally nuanced meanings of terms and phrases used by the broader community leading to challenges for caregivers filling out forms and preventing clinicians from understanding scores; (c) a comparison of autism and intervention terms translated using backtranslation, “cultural” translation, and backtranslation; and (d) examples of how translational challenges impact client-clinician interactions in a diagnostic space.

This connects to the theme of “Cultural Perspectives Leading to Impactful Practices” by increasing awareness of how consideration of non-traditional disciplines (e.g., measurement and linguistics) can inform and improve interdisciplinary allied health research, leading to more effective autism identification tools.

Breaking the Silence: Understanding Autism in Black Families and Addressing Gaps in Services

Tishon Creswell

This presentation explores the challenges Black families face in raising an autistic child, particularly the community stigma that can contribute to denial, late diagnoses, and missing early intervention. These challenges results from Black families struggling with openly discussing autism due to cultural beliefs, misinformation, and fear of judgment from their community, alongside gaps in essential services (e.g., limited transportation, financial barriers, etc …) that can prevent families from accessing crucial resources. This presentation will share my personal journey as a grandmother to a nonverbal autistic grandson, highlighting the emotional, cultural, and service access challenges we faced, centered on key insights from my book, I Can Play Too! Kobee’s Journey With Autism, which encourages family engagement and inclusive play for autistic children.

ACE participants will learn: (a) about stigma associated with autism in Black families (e.g., autism as personal/ spiritual failing) and how it affects diagnosis, treatment, and family dynamics; (b) to recognize cultural barriers (e.g., non-scientific and faith-based information) that contribute to denial and delayed access to autism services; (c) about key service gaps (e.g., transportation) and other barriers (e.g., financial, healthcare access, etc …) that delay access to identification and intervention; (d) about the role of family dynamics that facilitate and impeded access support; (e) strategies to help Black families overcome stigma and advocate for early intervention and therapy access; and (f) ways to support nonverbal autistic children through inclusive play and family engagement with vital community partners (e.g., churches).

This connects to the theme of “Cultural Perspectives Leading to Impactful Practices” by addressing community-based cultural stigma and its impact on access to autism care in Black communities. By examining the perspectives, beliefs, and misconceptions that influence autism diagnosis and treatment, we can better address connecting families with effective practices that truly meet the needs of Black families in a timely fashion.

Unseen Barriers, Unstoppable Futures: Mitigating Cultural and Economic Challenges for Minority Adults with Moderate to Severe Autism

Alisha McGlawn

This presentation addresses challenges faced by minority adults with moderate to severe autism. Despite increased awareness of autism, barriers, cultural stigmas, economic challenges, and policy limitations continue to restrict access to essential resources such as healthcare, employment, and community support. The purpose of this session is to: (a) identify key cultural and economic barriers that impact minority adults with autism; (b) explore how cultural perspectives influence service access, caregiving approaches, and policy development, (c) highlight successful, culturally responsive strategies that promote inclusion and economic empowerment, and (d) provide attendees with practical tools and insights to advocate for services in their communities and organizations.

ACE participants will learn: (a) how cultural differences can affect the interpretation and response to autism, affecting diagnosis, treatment, and acceptance; (b) how economic barriers impact employment, healthcare, access to waivers/supports and independent living resources; (c) where existing policies create barriers for adults with autism and how advocacy could bridge these gaps; and (d) real-world examples of successes building responsive support programs, employment models, and community-driven initiatives.

This connects to the theme of “Cultural Perspectives Leading to Impactful Practices” by demonstrating how cultural understanding is essential for creating impactful and lasting change. By recognizing the role of cultural perspectives in shaping autism-related services and policies, we can develop more effective solutions that work for all society members.

Travel the Sensory Path: All Roads Lead to Regulation and Engagement

Katie Hagan, Esther Whitaker, Emily Graham, Angela Reuvers

Incorporating sensory activities throughout a child’s day plays a crucial role in helping them learn the skills needed to participate fully in their learning environment. The session highlights practical techniques such as deep breathing exercises, sensory breaks, and calm-down kits to aid self-regulation. Additionally, it emphasizes motivating activities, structured environments, and peer involvement to boost engagement. Thus, this training session explores effective sensory strategies designed to enhance self-regulation and engagement among preschool children in the early learning setting.

ACE audience members will gain greater insights into the role of sensory based play has a positive impact on children’s functioning. In this session ACE attendees will explore sensory strategies that help preschool children self-regulate and stay engaged in everyday environments that may be overstimulating and/or distracting. Presenters will demonstrate how sensory activities can support communication development in practical and meaningful ways. Furthermore, we will provide ACE attendees with practical tools and techniques that can be easily implemented within the classroom during daily routines.

This connects to theme of “Cultural Perspectives Leading to Impactful Practices” by facilitating understanding among the broader community of the importance of sensory activities to help young children acclimate to their environments. This session will be of interest to anyone interested in strategies to enhance self-regulation and engagement.

 

How Parents Can Help Their Child Navigate Autism and Independence In Adulthood: 10 Ways Parents Can Help Increase Their Adult Child Achieve Independent Living

Terrae L. Ward

All caregivers find themselves in a world filled with the latest expert advice on helping children with autism optimize their development. While much of this expert advice contains useful techniques from research, there are relatively few sources distilling the wisdom of lived experience from caregivers who ultimately manage details: (a) unavailable in the latest “self help” book, (b) unknown by the recently graduated case manager whose knowledge of children is theoretical, (c) or whose insurance did not adequately cover the clinical hours really required to enact lasting change. The purpose of this session is to outline how one mother’s wisdom and experience training her son with autism to: (a) build pragmatic daily living skills, (b) grapple with reality as it is, and (c) celebrate daily “wins.”

ACE participants will better understand applied ways to build children’s skills in the areas of: (a) Developing household chores (Builds core skills), (b) Making Meals (learns to feed oneself), (c) Volunteer (teaches compassion), (d) Letting them earn the things they want (It’s how the world works), (e) Putting them on a schedule/routine (sets expectation), (f) Letting them ‘care’ for something (Plant or fish. Teaches dependability/ responsibility), (g) Setting boundaries (Everyone must follow rules), (h) Enforcing consequences (It’s the result of rules being broken), and (i) Being consistent (They can’t learn if parents are inconsistent). Finally, this session will provide insights into Celebrating their wins!

This connects to the theme of “Cultural Perspectives Leading to Impactful Practices” by addressing the fact that the first culture most children learn is from their family, the same people who are there when the book chapters and billable hours run out. In the broader expert culture, it is caregivers who ultimately figure out what works for their children.

Building Bridges: Student-Focused Collaboration at the IEP Table

Brandi Tanner

Families, school teams, and private clinicians each bring different individual and professional perspectives, cultures, and values to discussions about services and accommodations for students with autism spectrum disorder. Occasionally, these differences result in the parties being at odds when developing Individualized Education Plans (IEP) 504 Accommodation Plans. This presentation will describe a framework for student success and strategies to facilitate student-focused collaboration.

ACE Participants will learn actionable strategies around: (a) how clinical, clerical, and communication factors influence the special education process, (b) differences between a diagnosis and eligibility for special education services, (c) ways to foster effective communication at the IEP or 504 table, (d) common behaviors leading to misunderstandings and conflict between IEP team members, and (e) using the “3 C’s of Student Success” to guide members navigating the securing and developing comprehensive educational support systems.

This connects to the theme of “Cultural Perspectives Leading to Impactful Practices” by considering the interplay of cultural values across parties. For school personnel, these meetings are a professional-technical space, whereas for families it is often an intimate and personal space. Understanding and acknowledging the different perspectives allows all team members to better collaborate in service of the student whose services are necessarily framed within a professional-technical space wherein the personal experiences of family members are a secondary concern.