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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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Do the rules apply in school?

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This week is focused on what happens in schools, including classification, service receipt and new interventions.  How an educational classification translates to a clinical diagnosis, how and what factors are important in receiving services, what teachers think about repetitive behaviors and finally, a new intervention that can be delivered by therapists in school or mental health settings.  They all have real-life consequences for kids who are receiving services in school.

 

https://www.ncbi.nlm.nih.gov/pubmed/30892948

https://www.ncbi.nlm.nih.gov/pubmed/30848681

https://www.ncbi.nlm.nih.gov/pubmed/30889547

https://jamanetwork.com/journals/jamapsychiatry/article-abstract/2727134

 

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Parents are people too

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Sometimes parents get a bad rap for not having autism themselves, or not being in touch with the challenges of autistic adults.  This week’s ASF Podcast highlights two new studies on the role parents play in science, research and understanding racial disparities.  A group in the United Kingdom released the results of a survey across Europe which examined parent perceptions on early autism research (think infants and toddlers) and how researchers could better help families at this stage.  Another study from researchers in Georgia and Connecticut revealed how important parents (and clinicians) can be in reducing the disparity in diagnosis between black and white children in the US.  Finally, a call to unite over a common challenge: employment.  If you have not done so already, please make your voice heard as a parent, autistic adult, employer or service provider on a survey gauging the needs of the entire autism community around employment.  http://www.lernerlab.com/employmentsurvey.html 

 

Here are the references used in this podcast:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4230972/ 

https://www.autismspeaks.org/sites/default/files/docs/as_science_planning_survey_final_pdf_0.pdf

https://www.ncbi.nlm.nih.gov/pubmed/29126359

https://www.ncbi.nlm.nih.gov/pubmed/29100475

 

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The world agrees on studies of early autism. Find out what they think.

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Studies of very early signs of autism, even before an official diagnosis can be made, has led to better recognition of early signs and driven earlier and earlier interventions.  These interventions have improved the lives of people with autism.  The biological signs like brain activity, structure and genetics could further improve early intervention paradigms that look at biomarkers rather than just behavioral features.   Studies of these early signs are best looked at through symptoms in younger siblings of those with a diagnosis, who have a 20x higher risk of ASD compared to those who do not.  To move to even more high impact discoveries, researchers need more families to participate.  But what do families really think of this type of research?  Adults and parents agree on the value of understanding the early signs of autism, but not always about what to call it.  This week’s podcast explains.

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Help for children with minimal language

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About 25-30% of children with autism show language impairment or no language at all, and these families often use assisted communication devices like picture exchange to help their children communicate.  Recently, electronic communication devices like the iPad have revolutionized the way that people communicate, but little research has been done on how and if they are really effective.    This week, a multidisciplinary group of researchers added an assisted communication device, an iPad, to behavioral intervention for a 9 month trial.  As it turns out, the group with all 3 (language intervention, behavioral intervention and the communication device) showed the greatest gains in language and speech, but only when the intervention was intense.  This new study shows that in the right context, these devices can help those who do not communicate with words, and provides preliminary proof that this technology is indeed helpful.