{"673594":{"#nid":"673594","#data":{"type":"news","title":"Documentary by Ivan Allen College Faculty Explores Challenges of Autism in Communities of Color","body":[{"value":"\u003Cp\u003E\u003Cspan\u003E\u003Cspan\u003E\u003Cspan\u003E\u201cWhy does my child act that way or do that?\u201d\u003C\/span\u003E\u003C\/span\u003E\u003C\/span\u003E\u003C\/p\u003E\r\n\r\n\u003Cp\u003E\u003Cspan\u003E\u003Cspan\u003E\u003Cspan\u003EA family\u2019s autism journey often begins with these questions. The answer given can change a child\u2019s future, so the race of the person asking it should not make a difference \u2014 but it does.\u003C\/span\u003E\u003C\/span\u003E\u003C\/span\u003E\u003C\/p\u003E\r\n\r\n\u003Cp\u003E\u003Cspan\u003E\u003Cspan\u003E\u003Cspan\u003EThat is why two faculty members from Georgia Tech\u2019s Ivan Allen College of Liberal Arts \u2014 Jennifer Singh and John Thornton \u2014 joined forces with Camille Proctor, founder of The Color of Autism Foundation, to create a documentary that tells the stories of six Black families raising autistic children.\u003C\/span\u003E\u003C\/span\u003E\u003C\/span\u003E\u003C\/p\u003E\r\n\r\n\u003Cp\u003E\u003Cspan\u003E\u003Cspan\u003E\u003Cspan\u003E\u003Cem\u003E\u003Cspan\u003ENavigating Autism in Communities of Color\u003C\/span\u003E\u003C\/em\u003E\u003Cspan\u003E, which \u003C\/span\u003E\u003Ca href=\u0022https:\/\/iac.gatech.edu\/events\/item\/672825\/navigating-autism-communities-color-documentary-premiere\u0022\u003E\u003Cspan\u003Epremieres at Georgia Tech on Friday, March 22\u003C\/span\u003E\u003C\/a\u003E\u003Cspan\u003E, follows the unique challenges Black families face along their autism journey.\u003C\/span\u003E\u003C\/span\u003E\u003C\/span\u003E\u003C\/span\u003E\u003C\/p\u003E\r\n\r\n\u003Cp\u003E\u003Cspan\u003E\u003Cspan\u003E\u003Cspan\u003E\u003Cspan\u003Ehttps:\/\/youtu.be\/w5y_lzRCCYM\u003C\/span\u003E\u003C\/span\u003E\u003C\/span\u003E\u003C\/span\u003E\u003C\/p\u003E\r\n\r\n\u003Cp\u003E\u003Cspan\u003E\u003Cspan\u003E\u003Cspan\u003EJennifer Singh produced the film. She is an associate professor in the \u003C\/span\u003E\u003Ca href=\u0022https:\/\/hsoc.gatech.edu\u0022\u003E\u003Cspan\u003ESchool of History and Sociology\u003C\/span\u003E\u003C\/a\u003E\u003Cspan\u003E and has been researching autism for the last 20 years. Her groundbreaking 2016 book, \u003Cem\u003EMultiple Autisms: Spectrums of Advocacy and Genomic Science,\u003C\/em\u003E explores the evolution and meanings of autism, both to the research community and to the people who live with it.\u003C\/span\u003E\u003C\/span\u003E\u003C\/span\u003E\u003C\/p\u003E\r\n\r\n\u003Cp\u003E\u003Cspan\u003E\u003Cspan\u003E\u003Cspan\u003EJohn Thornton, who directed the film, is an award-winning documentary filmmaker as well as the director of film and media production in Georgia Tech\u2019s \u003C\/span\u003E\u003Ca href=\u0022https:\/\/lmc.gatech.edu\u0022\u003E\u003Cspan\u003ESchool of Literature, Media, and Communication\u003C\/span\u003E\u003C\/a\u003E\u003Cspan\u003E.\u003C\/span\u003E\u003C\/span\u003E\u003C\/span\u003E\u003C\/p\u003E\r\n\r\n\u003Cp\u003E\u003Cspan\u003E\u003Cspan\u003E\u003Cspan\u003E\u201cStructural inequalities shape the differences we see in autism diagnosis and access to services based on race and ethnicity,\u201d said \u003C\/span\u003E\u003Ca href=\u0022https:\/\/iac.gatech.edu\/people\/person\/jennifer-singh\u0022\u003E\u003Cspan\u003ESingh\u003C\/span\u003E\u003C\/a\u003E\u003Cspan\u003E. \u201cPeople aren\u2019t reaching their full potential. It\u2019s an injustice, and that\u2019s why we made the film.\u201d\u003C\/span\u003E\u003C\/span\u003E\u003C\/span\u003E\u003C\/p\u003E\r\n\r\n\u003Cp\u003E\u003Cspan\u003E\u003Cspan\u003E\u003Cstrong\u003E\u003Cspan\u003EThe Road to Diagnosis\u003C\/span\u003E\u003C\/strong\u003E\u003C\/span\u003E\u003C\/span\u003E\u003C\/p\u003E\r\n\r\n\u003Cp\u003E\u003Cspan\u003E\u003Cspan\u003E\u003Cspan\u003EFor example, early intervention is critical for children on the autism spectrum. But for that to happen, they need to be diagnosed at an early age. \u003C\/span\u003E\u003C\/span\u003E\u003C\/span\u003E\u003C\/p\u003E\r\n\r\n\u003Cp\u003E\u003Cspan\u003E\u003Cspan\u003E\u003Cspan\u003E\u201cThe process doesn\u2019t end at diagnosis. That\u2019s when everything starts \u2014 referrals to special education, resources, and services that people need,\u201d said Singh.\u003C\/span\u003E\u003C\/span\u003E\u003C\/span\u003E\u003C\/p\u003E\r\n\r\n\u003Cp\u003E\u003Cspan\u003E\u003Cspan\u003E\u003Cspan\u003ESingh said there is a longer delay for Black parents from the time they are first concerned about their children until they get a diagnosis. She added that parents\u2019 reluctance to give their children medical labels, given the stigma associated with mental health in Black communities, plays some part in the delays. \u003C\/span\u003E\u003C\/span\u003E\u003C\/span\u003E\u003C\/p\u003E\r\n\r\n\u003Cp\u003E\u003Cspan\u003E\u003Cspan\u003E\u003Cspan\u003EPhysicians who perceive autism as primarily a white, male condition also play a big part in delaying a diagnosis. This assumption can result in a \u201cwait and see\u201d approach, or much worse, a misdiagnosis with a conduct or behavioral disorder.\u003C\/span\u003E\u003C\/span\u003E\u003C\/span\u003E\u003C\/p\u003E\r\n\r\n\u003Cp\u003E\u003Cspan\u003E\u003Cspan\u003E\u003Cspan\u003E\u201cMisdiagnosis impacts a child\u2019s ability to stay in school or get the resources they need, because they\u2019ve been labeled a \u2018bad\u2019 child,\u201d said \u003C\/span\u003E\u003Ca href=\u0022https:\/\/iac.gatech.edu\/people\/person\/john-thornton\u0022\u003E\u003Cspan\u003EThornton\u003C\/span\u003E\u003C\/a\u003E\u003Cspan\u003E. \u003C\/span\u003E\u003C\/span\u003E\u003C\/span\u003E\u003C\/p\u003E\r\n\r\n\u003Cp\u003E\u003Cspan\u003E\u003Cspan\u003E\u003Cspan\u003EDr. Bernadette Kilo, a pediatrician and certified autism spectrum disorder clinical specialist who was interviewed by the filmmakers, said clinicians more often misdiagnose children of color.\u003C\/span\u003E\u003C\/span\u003E\u003C\/span\u003E\u003C\/p\u003E\r\n\r\n\u003Cp\u003E\u003Cspan\u003E\u003Cspan\u003E\u003Cspan\u003E\u201cA lot of the African American kids or brown kids I see [were previously] diagnosed with oppositional defiant disorder or behavioral conduct disorder,\u201d said Kilo. \u201cUnfortunately, a lot of clinicians are not reading what is up to date. A lot of the information they have about autism dates as far back as 1939 \u2026 which poses a huge challenge and only adds to the stigma and the misunderstanding of what autism is.\u201d\u003C\/span\u003E\u003C\/span\u003E\u003C\/span\u003E\u003C\/p\u003E\r\n\r\n\u003Cp\u003E\u003Cspan\u003E\u003Cspan\u003E\u003Cstrong\u003E\u003Cspan\u003EMultiple Autisms\u003C\/span\u003E\u003C\/strong\u003E\u003C\/span\u003E\u003C\/span\u003E\u003C\/p\u003E\r\n\r\n\u003Cp\u003E\u003Cspan\u003E\u003Cspan\u003E\u003Cspan\u003EOne of the biggest challenges in the medical system, Singh said, is that the national health data on autism is heavily skewed toward one segment of the population.\u003C\/span\u003E\u003C\/span\u003E\u003C\/span\u003E\u003C\/p\u003E\r\n\r\n\u003Cp\u003E\u003Cspan\u003E\u003Cspan\u003E\u003Cspan\u003E\u201cSo many of the tools we\u2019ve created for diagnosis, therapies, and interventions are based on data from white, mostly male populations coming from families who have private insurance and make over $70,000 a year,\u201d she said. \u201cThere are assumptions built into the outcomes they\u2019re measuring and the recommendations they\u2019re making.\u201d\u003C\/span\u003E\u003C\/span\u003E\u003C\/span\u003E\u003C\/p\u003E\r\n\r\n\u003Cp\u003E\u003Cspan\u003E\u003Cspan\u003E\u003Cspan\u003EThese assumptions affect the Black experience of autism and our understanding of it.\u003C\/span\u003E\u003C\/span\u003E\u003C\/span\u003E\u003C\/p\u003E\r\n\r\n\u003Cp\u003E\u003Cspan\u003E\u003Cspan\u003E\u003Cspan\u003E\u201cThe way we define autism and how we recognize the signs could be very different for girls, for people of color, or for people who don\u2019t speak English,\u201d said Singh.\u003C\/span\u003E\u003C\/span\u003E\u003C\/span\u003E\u003C\/p\u003E\r\n\r\n\u003Cp\u003E\u003Cspan\u003E\u003Cspan\u003E\u003Cstrong\u003E\u003Cspan\u003E\u201cThere Are No Services Where I Live\u201d\u003C\/span\u003E\u003C\/strong\u003E\u003C\/span\u003E\u003C\/span\u003E\u003C\/p\u003E\r\n\r\n\u003Cp\u003E\u003Cspan\u003E\u003Cspan\u003E\u003Cspan\u003EIn 2021, Singh \u003C\/span\u003E\u003Ca href=\u0022https:\/\/iac.gatech.edu\/news\/item\/650277\/interactive-autism-services-shows-inequality-helps-georgians-find-services\u0022\u003E\u003Cspan\u003Epublished a map of autism services in Georgia\u003C\/span\u003E\u003C\/a\u003E\u003Cspan\u003E that showed how most therapies referred for autism \u2014 behavioral, physical, occupational speech, and other supports \u2014 are clustered in the northern suburbs of Atlanta, far from the city center.\u003C\/span\u003E\u003C\/span\u003E\u003C\/span\u003E\u003C\/p\u003E\r\n\r\n\u003Cp\u003E\u003Cspan\u003E\u003Cspan\u003E\u003Cspan\u003E\u201cParents would consistently tell me, \u2018There are no services where I live,\u2019\u201d said Singh. \u201cFurthermore, the educational system is such a critical component to accessing therapies, but where you live and the school district you\u2019re in are related to what resources are available to you.\u201d \u003C\/span\u003E\u003C\/span\u003E\u003C\/span\u003E\u003C\/p\u003E\r\n\r\n\u003Cp\u003E\u003Cspan\u003E\u003Cspan\u003E\u003Cspan\u003E\u201cMost of the services are in a particular part of the state, which makes it increasingly difficult and expensive to get there,\u201d added Thornton.\u003C\/span\u003E\u003C\/span\u003E\u003C\/span\u003E\u003C\/p\u003E\r\n\r\n\u003Cp\u003E\u003Cspan\u003E\u003Cspan\u003E\u003Cspan\u003EThe development of the autism services map project, as well as the documentary, was inspired by Singh\u2019s ethnographic research on autism service inequities in Georgia. In 2018, she co-founded a working group \u003C\/span\u003E\u003Ca href=\u0022https:\/\/www.breakthecycleprogram.org\/break-the-cycle-of-autism\u0022\u003E\u003Cspan\u003E\u201cBreak the Cycle of Autism Disparities,\u201d\u003C\/span\u003E\u003C\/a\u003E\u003Cspan\u003E a transdisciplinary collaborative group of researchers, clinicians, and therapists from multiple universities in Georgia, the Centers for Disease Control and Prevention (CDC), and the Marcus Autism Center. The group is dedicated to promoting equity in autism services, resources, and outcomes. \u0026nbsp;\u0026nbsp;\u003C\/span\u003E\u003C\/span\u003E\u003C\/span\u003E\u003C\/p\u003E\r\n\r\n\u003Cp\u003E\u003Cspan\u003E\u003Cspan\u003E\u003Cstrong\u003E\u003Cspan\u003E\u201cWhat Happens When They\u2019re Six Feet Tall?\u201d\u003C\/span\u003E\u003C\/strong\u003E\u003C\/span\u003E\u003C\/span\u003E\u003C\/p\u003E\r\n\r\n\u003Cp\u003E\u003Cspan\u003E\u003Cspan\u003E\u003Cspan\u003EAutism is a lifelong condition, and people on the autism spectrum often speak and behave in ways that fall outside social norms. Singh said parents of Black autistic children must consider the risks this could present to their safety when they are older.\u003C\/span\u003E\u003C\/span\u003E\u003C\/span\u003E\u003C\/p\u003E\r\n\r\n\u003Cp\u003E\u003Cspan\u003E\u003Cspan\u003E\u003Cspan\u003E\u201cSome moms have lamented, \u2018My kids are cute now, but what happens when they\u2019re six feet tall?\u2019 If you are pulled over by the police and you\u2019re talking to yourself or not following directions, that can be extremely dangerous,\u201d said Singh. \u201cThat\u2019s the reality when you add being male, Black, and having a condition like autism that can present with communication challenges.\u201d\u003C\/span\u003E\u003C\/span\u003E\u003C\/span\u003E\u003C\/p\u003E\r\n\r\n\u003Cp\u003E\u003Cspan\u003E\u003Cspan\u003E\u003Cspan\u003E\u201cThere is a fear from parents, that the world is not going to see them as autistic, but as having some sort of behavioral issue,\u201d Thornton said. \u201cAnd that could threaten their lives.\u201d\u003C\/span\u003E\u003C\/span\u003E\u003C\/span\u003E\u003C\/p\u003E\r\n\r\n\u003Cp\u003E\u003Cspan\u003E\u003Cspan\u003E\u003Cstrong\u003E\u003Cspan\u003ERaising Awareness\u003C\/span\u003E\u003C\/strong\u003E\u003C\/span\u003E\u003C\/span\u003E\u003C\/p\u003E\r\n\r\n\u003Cp\u003E\u003Cspan\u003E\u003Cspan\u003E\u003Cspan\u003ESingh says she has seen some positive changes over the past few years. She pointed to the prevalence of autism, which has risen from 1 in 150 in 2000 to 1 in 36 in 2024 \u003C\/span\u003E\u003Ca href=\u0022https:\/\/www.cdc.gov\/ncbddd\/autism\/data.html\u0022\u003E\u003Cspan\u003Eaccording to the CDC\u003C\/span\u003E\u003C\/a\u003E\u003Cspan\u003E, as both an indicator and a source of rising awareness. The most recent CDC estimates show that Black and Hispanic children have the same prevalence as white children.\u003C\/span\u003E\u003C\/span\u003E\u003C\/span\u003E\u003C\/p\u003E\r\n\r\n\u003Cp\u003E\u003Cspan\u003E\u003Cspan\u003E\u003Cspan\u003E\u201cAdults today who were diagnosed as children \u2014 it was a different story than it is today for young children who are getting diagnosed. There are a lot more resources and a lot more awareness,\u201d she said. \u003C\/span\u003E\u003C\/span\u003E\u003C\/span\u003E\u003C\/p\u003E\r\n\r\n\u003Cp\u003E\u003Cspan\u003E\u003Cspan\u003E\u003Cspan\u003E\u201cThere\u2019s also more acknowledgement that autism has been largely constructed as a white male condition and that the diagnostic tools and interventions for the most part are based on a particular population,\u201d she added.\u003C\/span\u003E\u003C\/span\u003E\u003C\/span\u003E\u003C\/p\u003E\r\n\r\n\u003Cp\u003E\u003Cspan\u003E\u003Cspan\u003E\u003Cstrong\u003E\u003Cspan\u003EOne Page in the Story\u003C\/span\u003E\u003C\/strong\u003E\u003C\/span\u003E\u003C\/span\u003E\u003C\/p\u003E\r\n\r\n\u003Cp\u003E\u003Cspan\u003E\u003Cspan\u003E\u003Cspan\u003ESingh and Thornton said it was impossible to get everything they wanted into the one-hour documentary, but they hope it will bring more people into the conversation.\u003C\/span\u003E\u003C\/span\u003E\u003C\/span\u003E\u003C\/p\u003E\r\n\r\n\u003Cp\u003E\u003Cspan\u003E\u003Cspan\u003E\u003Cspan\u003E\u201cI wanted to raise awareness about autism. It happens in Black communities. This is their experience,\u201d said Singh. \u201cIt\u2019s just six families, but I hope it opens up a dialogue of the how Black families encounter autism diagnosis and services in a structurally unequal society.\u201d\u003C\/span\u003E\u003C\/span\u003E\u003C\/span\u003E\u003C\/p\u003E\r\n\r\n\u003Cp\u003E\u003Cspan\u003E\u003Cspan\u003E\u003Cspan\u003E\u201cThe film is just one page in a book, adding to the story about how people are navigating this challenge,\u201d said Thornton. \u201cWe want to get people in the room, to get them talking about it. We hope people want to learn more.\u201d\u003C\/span\u003E\u003C\/span\u003E\u003C\/span\u003E\u003C\/p\u003E\r\n\r\n\u003Cp\u003E\u003Cspan\u003E\u003Cspan\u003E\u003Cspan\u003EThe film is not yet available to the public, but you can \u003C\/span\u003E\u003Ca href=\u0022https:\/\/sites.gatech.edu\/navigatingautism\/newsletter\/\u0022\u003E\u003Cspan\u003Esign up\u003C\/span\u003E\u003C\/a\u003E\u003Cspan\u003E for the project\u2019s newsletter for updates.\u003C\/span\u003E\u003C\/span\u003E\u003C\/span\u003E\u003C\/p\u003E\r\n","summary":"","format":"limited_html"}],"field_subtitle":"","field_summary":[{"value":"\u003Cp\u003E\u003Cspan\u003E\u003Cspan\u003EGeorgia Tech faculty members Jennifer Singh and John Thornton produced and directed a documentary film that tells the stories of six Black families raising autistic children. The film \u003Ca href=\u0022https:\/\/iac.gatech.edu\/events\/item\/672825\/navigating-autism-communities-color-documentary-premiere\u0022\u003E\u003Cspan\u003Epremieres at Georgia Tech on Friday, March 22\u003C\/span\u003E\u003C\/a\u003E.\u003C\/span\u003E\u003C\/span\u003E\u003C\/p\u003E\r\n","format":"limited_html"}],"field_summary_sentence":[{"value":"Georgia Tech faculty members Jennifer Singh and John Thornton produced and directed a documentary film that tells the stories of six Black families raising autistic children."}],"uid":"35777","created_gmt":"2024-03-18 20:16:59","changed_gmt":"2024-03-18 21:09:09","author":"Stephanie Kadel","boilerplate_text":"","field_publication":"","field_article_url":"","dateline":{"date":"2024-03-18T00:00:00-04:00","iso_date":"2024-03-18T00:00:00-04:00","tz":"America\/New_York"},"extras":[],"hg_media":{"673433":{"id":"673433","type":"image","title":"Jennifer Singh, associate professor in the School of History and Sociology, and John Thornton, director of film and media production in the School of Literature, Media, and Communication","body":"\u003Cp\u003EJennifer Singh, associate professor in the School of History and Sociology, and John Thornton, director of film and media production in the School of Literature, Media, and Communication\u003C\/p\u003E\r\n","created":"1710793610","gmt_created":"2024-03-18 20:26:50","changed":"1710794924","gmt_changed":"2024-03-18 20:48:44","alt":"Jennifer Singh, associate professor in the School of History and Sociology, and John Thornton, director of film and media production in the School of Literature, Media, and Communication","file":{"fid":"256830","name":"Stephanie\u0027s Sandbox.png","image_path":"\/sites\/default\/files\/2024\/03\/18\/Stephanie%27s%20Sandbox_0.png","image_full_path":"http:\/\/hg.gatech.edu\/\/sites\/default\/files\/2024\/03\/18\/Stephanie%27s%20Sandbox_0.png","mime":"image\/png","size":179443,"path_740":"http:\/\/hg.gatech.edu\/sites\/default\/files\/styles\/740xx_scale\/public\/2024\/03\/18\/Stephanie%27s%20Sandbox_0.png?itok=x6MVE_tF"}}},"media_ids":["673433"],"groups":[{"id":"1281","name":"Ivan Allen College of Liberal Arts"},{"id":"1288","name":"School of History and Sociology"},{"id":"1283","name":"School of Literature, Media, and Communication"}],"categories":[],"keywords":[{"id":"169918","name":"Jennifer Singh"},{"id":"174283","name":"John Thornton"},{"id":"77991","name":"documentary film"},{"id":"6053","name":"Autism"},{"id":"179770","name":"Autism Spectrum Disorder (ASD)"}],"core_research_areas":[],"news_room_topics":[],"event_categories":[],"invited_audience":[],"affiliations":[],"classification":[],"areas_of_expertise":[],"news_and_recent_appearances":[],"phone":[],"contact":[{"value":"\u003Cp\u003E\u003Ca href=\u0022mailto:stephanie.kadel@gatech.edu\u0022\u003EStephanie N. Kadel\u003C\/a\u003E\u003Cbr \/\u003E\r\nIvan Allen College of Liberal Arts\u003C\/p\u003E\r\n","format":"limited_html"}],"email":["stephanie.kadel@gatech.edu"],"slides":[],"orientation":[],"userdata":""}}}