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The 2024 Day Of Learning Quickie

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Did you miss the ASF 2024 Day of Learning and can’t wait for the videos to be posted? This is a 17 minute brief summary of what was discussed, but unfortunately, with no visuals. Don’t just listen to the podcast, watch the videos when they are posted. Also included in this podcast is a shoutout to the Profound Autism Summit which brought together hundreds of advocates around those who need 24/7 care for their lives. The link to their advocacy page is here: https://www.votervoice.net/ProfoundAutism/campaigns/112917/respond

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The Trouble with Transitions

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This podcast has not covered transition from adolescence to adulthood in the past, probably because there has not been a lot of research in this area. Luckily, recently there has been a surge of investigations and scientifically – supported interventions and recommendations for individuals who are transitioning to adulthood. This podcast reviews the latest in where the gaps are and identified some (of many) areas that need further research. Here are the references that will be helpful.

https://pubmed.ncbi.nlm.nih.gov/38493400/

https://pubmed.ncbi.nlm.nih.gov/38501189/

https://pubmed.ncbi.nlm.nih.gov/38423723/

https://www.autismspeaks.org/tool-kit/transition-tool-kit

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“What is Profound Autism?” with Matt from the podcast Behavioral Observations

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This week’s podcast will be an interview with Matt Cicoria from the podcast Behavioral Observations. We discuss the meaning of the words “Profound Autism” and why a blanket term of “autism spectrum disorder” may not be helping anyone on the spectrum. If you are in the Boston area on April 5th, please attend the Profound Autism Summit, link here: https://www.profoundautismsummit.org

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Missed the Meeting on Language in Autism? Listen to this podcast

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Last week in North Carolina, the Meeting on Language in Autism was held, with 3 days of amazing presentations and lots of productive discussions about how language and speech develops and how people with autism communicate. This podcast describes the origins of language development and how intervention during toddlerhood can promote lifelong language abilities. To learn more about the meeting go to www.mola.org and to see the Autism Navigator, go to www.autismnavigator.org.

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How does autism prediction work?

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This podcast provides updates on studies that help with prediction of an autism diagnosis – which is important for preparing for the future and for intervening early. First, a study that uses environmental factors to create an equation for the probability of a diagnosis following a combination of of non-genetic factors only which does a fairly good, but not perfect, job at predicting a diagnosis. Second, a study that looks at the accuracy of a machine that predicts autism from eye gaze as early as 9 months of age and with only a 2 minute test. This one wasn’t as accurate as the one that takes longer and tests older kids, but it’s a first step. No ONE thing does a perfect job at predicting a diagnosis – it’s going to be a combination of things, tested over time and multiple times that will be most helpful at predicting a diagnosis. Both studies are open access!

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10904522/pdf/fpsyt-15-1291356.pdf

https://www.ncbi.nlm.nih.gov/pmc/articles/pmid/38429348/

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What is the IACC and what do they do?

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On this week’s podcast we interview Dr. Susan Daniels who is the National Autism Coordinator for the Department of Health and Human Services. This position is created by the Autism CARES Act (which is under reauthorization) and represents one of the only disorders that provides coordinating functioning across funding agencies. We talk about what her office does, what the IACC is responsible for, and what the strategic plan for autism from the IACC advises congress to do. She also discusses some upcoming events for Autism Awareness Month.

Links referenced in our conversation are below:

https://iacc.hhs.gov

https://iacc.hhs.gov/publications/strategic-plan/2023/

https://iacc.hhs.gov/funding/data/

https://p2a.co/tCy86Lk

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Are new ICD-11 criteria for an autism diagnosis too vague?

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In the last version of the Diagnostic and Statistical Manual, the different subtypes of autism were folded into one label: autism spectrum disorder. A similar revision is being made around the International Classification of Diseases, the system the WHO uses across the world to describe autism and provide appropriate reimbursements for services and supports. In this version, the ICD-11, a combination of 300 different presentations of autism are described. A diagnosis can be made if 1 feature of social-communication and 1 feature of repetitive behaviors are documented, with an onset of any time in life. This is causing a lot of confusion in the community, because since the presentations are not specific to autism, it is difficult to provide an accurate diagnosis using the ICD-11. This week we talk to German psychiatrist Inge Kamp-Becker, MD, who outlines what the changes are, and how misdiagnosis can be made and what those consequences might be. Her summary is linked below.

https://www.nature.com/articles/s41380-023-02354-y

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Learn about your infant’s development from your own home

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Are you the parent of an infant? Are you wondering how you can get assessments on your child without having to struggle with your pediatrician’s time at a well- baby checkup? Are you interested in how your baby is thinking or communicating but your doctor says “it’s too early to tell?” A new study based out of Duke University is using remote computer based assessments to understand the very earliest markers of language and cognition to better predict later social development. The twist? It’s all done remotely. You can participate in research, get a gift card, and learn about your baby’s development all without leaving the house. This has been a struggle for many families and this may open the door for more video-based, but thorough, assessments.

Children Helping Science

sites.duke.edu/risebattery

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How do you solve a problem like aggression?

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Irritability and aggression are dangerous behaviors that can lead to harm and injury and are overlooked in research. Unfortunately there are only two FDA medications approved to treat them in autism. The drugs have many side effects, and there are efforts to improve these treatments and minimize side effects by lowering the dose with adjunct therapies that enhance the efficacy of the drug. So far, there are a few promising leads, but nothing that is ready for the clinic. How do scientists make the move from an interesting discovery in a lab to testing the safety and efficacy of a drug? Through animal models or model systems that examine different phenotypes in an animal and test medications on outcomes like aggression. Mice are not people, but they are necessary to ensure safe and effective treatments are translated into practice.

https://pubmed.ncbi.nlm.nih.gov/38263251/

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Speak now

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Those who are minimally verbal or non speaking represent about 25% of those with an autism diagnosis, yet there is really a lack of effective interventions for this group of autistic individuals. It used to be that everyone who was non-speaking was thought to have minimal ability to understand language, since understanding and speaking are so linked in development. However, group at Boston University studied the largest group of non-speaking autistic individuals so far and discovered that about 25% of them understand more language than they can speak, although this ability is still far lower than those who are neurotypical. The other 75% understand about as much as they can communicate verbally. This indicates that in some cases, the ability to understand words and their meaning exceeds the ability to communicate those ideas verbally. Surprise surprise, just like everything autism – there are differences across the spectrum. Thanks to Yanru Chen at Boston University for explaining the study to us.

https://onlinelibrary.wiley.com/doi/10.1002/aur.3079