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Contemplating “syndromic autism”

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The words “syndromic autism” have been used to describe individuals with autism who also have a rare genetic mutation. Is it time to change those words to something else? Scientists and clinicians Drs. Jacob Vorstman and Steve Scherer from the University of Toronto share recent data in understanding autism, the role of genetic testing in autism in predicting and treating other conditions that someone with autism may have, and why the words “syndromic autism” may need to be updated to describe a subgroup of autism.

https://pubmed.ncbi.nlm.nih.gov/37330697/

Below is the Figure 1 that Dr. Scherer refers to:

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The full semantic toolbox referring to autism

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Last week a publication (see below) was published as a commentary in the journal Autism Research. It states that researchers, parents, clinicians, educators and the overall community should not be limited in their use of language to describe the broad condition of autism. Some people experience impairments, deficits, and have limitations. Not only is it true, we should be talking about it. This podcast describes the motivation for the paper and the potential consequences of mandating the use terms that may not accurately reflect the diversity of experiences. While some papers have been published with the opposite sentiments, it’s important to understand both sides of this debate. We hope this paper leads to further conversation about this topic.

https://onlinelibrary.wiley.com/doi/10.1002/aur.2876

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The meaningful impact of clinical trials

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Clinical trials in autism are so incredibly important to families and adults, but sometimes hard to understand. Why? How can it help me or my family? What do I need to do? What do all of these terms mean? For researchers: it’s hard to get families to participate in my study. What can I do to improve the appeal? Caroline Averius and Zachary Williams explain in this podcast about a newly launched two new guidebooks designed to help explain clinical trials, why they are important and what needs to be shared with the community to ensure transparency.

Want to read them? Links below:

https://tinyurl.com/AutismTrialsGuidebook

https://tinyurl.com/AutismTrialsExplainer