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What’s Quality of Life Got To Do With it?

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This week’s #ASFpodcast highlights a new study from Dr. Elizabeth Kaplan-Kahn, who is improving a measure of Quality of Life for autistic individuals who are minimally verbal or have cognitive disabilities. These individuals may have different outcomes as other autistics, but their responses are just as important. Dr. Kaplan-Kahn talks about what it means, how it is related to other outcomes collected, and what’s she’s doing to improve Quality of Life measures.

She working to do this through scientific study! If you or a family member is non-speaking or cognitively disabled, and want to help with improving measures of Quality of Life, click here: https://redcap.link/pablid

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Scientists: they are just like us. They are in a pandemic crisis too

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Scientists who help families affected by ASD may look like they have it all together, but the pandemic has been catastrophic not just on discoveries to help families, but to the people who conduct research, meet with families, and provide services. They have lives too, and those lives have interrupted their abilities to provide care and work towards easing suffering. This week’s podcast is a conversation between 3 early career investigators who helped conduct a survey of the common struggles, obstacles, and possible solutions to this problem.

https://autismsciencefoundation.org/wp-content/uploads/2021/03/ASF-ECR-Commentary-20211.pdf

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Pandemic Problems? ASD Researchers are Listening

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You have spoken, and scientists have listened, to surveys that have asked how you are doing, what your family needs, what is working and what has not worked. Telehealth gets mixed reviews, and kids are suffering from everything from anxiety to OCD. Other results of these surveys are covered in this week’s ASF podcast. Please continue to answer these requests for feedback, because the future of autism interventions, assessments and services depends on them.

https://pubmed.ncbi.nlm.nih.gov/32515992/

https://pubmed.ncbi.nlm.nih.gov/32503172/

https://pubmed.ncbi.nlm.nih.gov/32445682/

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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.