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Stigma experienced around the world

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Despite many years fighting it, families with autism still experience societal stigma. The experiences depend on many factors, summarized in the October 21st podcast. This week, Mia Kotikovski explores cultural factors involved in stigma. As examples, she explores the literature from Asia, the Middle East and the United Kingdom, how they are different, and how families cope with that stigma in different areas of the world.

https://link.springer.com/article/10.1007/s40489-023-00373-7

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9330163

https://link.springer.com/article/10.1007/s10803-019-04218-3

https://www.nature.com/articles/s41598-022-23978-0

https://molecularautism.biomedcentral.com/articles/10.1186/s13229-023-00579-w

https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0261774

https://onlinelibrary.wiley.com/doi/full/10.1002/aur.2652

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Where is autism stigma the worst in the world?

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This week, part 1 in cultural stigma around autism with Mia Kotikovski provides an overview of stigma, where it can come from across cultures and provides some examples of stigma in different countries. Different areas of the world are in different places in terms of their perceptions of autism, their needs for autism families, and what they perceive as their greatest difficulties. The topic is so important we broke it down into two sections. Please listen to both, it will explain a lot about autism services and supports around the world.

https://journals.sagepub.com/doi/10.1177/1362361318823550

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8992913

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11303671

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11303671

https://pubmed.ncbi.nlm.nih.gov/30248583

https://pubmed.ncbi.nlm.nih.gov/38507392

https://www.researchgate.net/publication/277816405_A_Cross-Cultural_Comparison_of_Knowledge_and_Stigma_Associated_with_Autism_Spectrum_Disorder_Among_College_Students_in_Lebanon_and_the_United_States?enrichId=rgreq-97b7d5f50aac4d5b124ea8295b42fdb0-XXX&enrichSource=Y292ZXJQYWdlOzI3NzgxNjQwNTtBUzoyNDI4NTI2Mzk4NDIzMDRAMTQzNDkxMTk4OTI3MA%3D%3D&el=1_x_3&_esc=publicationCoverPdf

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How to predict severe and dangerous behavior

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On the first podcast of 2024, we describe a new paper in the Journal of the American Medical Association or JAMA which uses physiological measurements like heart rate and skin conductance to predict severe and dangerous behaviors, specifically aggression. If aggression can be predicted, it might be able to be prevented. It turns out aggression can be predicted up to 3 minutes before an episode occurs, in the future these measures can be used to possibly redirect aggression. In a separate study, the issue of stigma is addressed. There is an intense debate over “person first” vs. “identity first” language in autism, promoting recommendations of using one over the other because fear that person first language promotes stigma against autism. A new study shows that there is no added prejudice or fear using either person first or identity first language, but the stigma associated with schizophrenia is worse than it is for autism. What contributes to stigma? There is a wide range of experiences and perceptions of autism that need to be addressed. It’s not as simple as the language used.

https://pubmed.ncbi.nlm.nih.gov/38127348/

https://pubmed.ncbi.nlm.nih.gov/37965364/

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Advice for better understanding underrepresented groups in autism research

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This week, we talk to Karla Rivera-Figueroa and Inge-Marie Eigsti, who together with Nana Yaa A. Marfo published a systematic review asking about parental perceptions of autism in both LatinX and Black Sociocultural contexts. Six themes popped out, and the question for Karla and Dr Eigsti were “how can research help”? What funding opportunities, culturally relevant materials, and future research directions need to be focused on? The conversation included ways to battle stigma, improve provider relationships, recruit a more diverse sample in research and fund those underrepresented scientists who want to study autism. As a note, ASF will be releasing their undergraduate fellowship mechanism on Tuesday which will focus on underrepresented groups.

https://pubmed.ncbi.nlm.nih.gov/34979034/

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Happy Pride all!

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This week’s podcast is dedicated to the “T” in LGBTQ –  trans.  Several studies over the past few years have linked higher rates of gender variance in people with autism and higher rates of autism traits in those who are trans.  Why?  Are they biologically or psychologically linked or both?  This is important for understanding, not treatment or intervention.  This week’s podcast celebrates trans people who are also autistic.

https://www.ncbi.nlm.nih.gov/pubmed/30547258

https://www.ncbi.nlm.nih.gov/pubmed/29752630

https://www.ncbi.nlm.nih.gov/pubmed/30920347

https://www.ncbi.nlm.nih.gov/pubmed/23864402