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Breakthrough for those with rare genetic disorders

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This week, more on genetics as an influence to an autism diagnosis with a twist: can genetics lead to a specific treatment for core symptoms – across the board? How do you measure such broad symptoms? Our Rett Syndrome family friends and colleagues developed a novel outcome measure to capture what was most important to them, and the FDA approved it for use in a clinical trial. Years later, a new drug was approved that led to a reduction in behaviors associated with Rett Syndrome. Autism can take a lesson from this. In addition, can the genetics of autism be explained by parents with similar phenotypes? This is called assortative mating. The answer is complex.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10450502/pdf/fped-11-1229553.pdf

https://www.nature.com/articles/s41591-023-02398-1

https://www.ncbi.nlm.nih.gov/pmc/articles/pmid/38877467

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We need more psychiatrists with expertise in autism

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General psychiatrists are trained deal with a range of psychiatric issues in a variety of areas, but very few have experience helping families of children and adults with autism. This is training that is desperately needed, as, like other professions, there are not enough psychiatrists to help families and waitlists are staggering. Dr. Arthur Westover at UT Southwestern discusses some potentially simple solutions, what he has tried and worked, and how families and advocacy groups can get more involved to ensure that doctors know about the unique and difficult psychiatric issues that autistics face. His ideas will not happen spontaneously, it’s going to take work to make psychiatrists more tuned into the needs of the autism community. He even wrote a paper (link below).

https://pubmed.ncbi.nlm.nih.gov/38782841

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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 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

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Psychedelics and Symptoms

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More and more, psychiatrists are looking to psychedelic medication to help individuals who are resistant to other types of therapies. These include seizures, PTSD and depression. But can they help individuals with autism or ease autism-related problems or improve cognition? Two new studies on cannabis and one on ketamine are summarized in this week’s ASFpodcast. Promising, interesting, but not definitive. It’s a short podcast this week.

https://pubmed.ncbi.nlm.nih.gov/36085294/

https://pubmed.ncbi.nlm.nih.gov/35617670/

https://www.sciencedirect.com/science/article/pii/S2666247722000549?via%3Dihub

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New ways to solve old problems

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This week’s podcast focuses on innovative methodologies to understand how to reach black families, understand why and when autistic people prefer not to look at faces and how interventions can improve conversation and social communication. They use culturally and racially matched mentors, old home video tapes (keep taking those!) and machine learning to look not just at novel methods but novel ways of studying a particular outcome.

https://pubmed.ncbi.nlm.nih.gov/35232271/

https://pubmed.ncbi.nlm.nih.gov/35228613/

https://pubmed.ncbi.nlm.nih.gov/35229983/

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Families work hard for treatments

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Unfortunately, families hear more about what does work to help families with ASD rather than what does not work. But through the course of decades of research, scientific projects and hours of families participation, there is a better picture of what treatments are, and are not, helpful. This week’s podcast will review what drugs have shown to not be effective so far in treating restrictive and repetitive behaviors and also provides an update on umbilical cord blood stem cell transfusions on social communication behaviors.

https://www.jpeds.com/article/S0022-3476(20)30334-6/pdf

https://jaacap.org/article/S0890-8567(20)30265-3/pdf

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More ASD links with hormones that are not well-known but are now shown

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Oxytocin treatment for social communication in ASD has been recntlyused by doctors, but mostly used by people using it on their own through a nasal spray. Unfortunately, it doesn’t have a huge, if any, effect in randomized clinical trials. This week’s podcast investigates current research in both the oxytocin and vasopressin system in ASD, when changes start, and how oxytocin administration has different effects in autistic women vs. neurotypical women. Once again, clinicians can not assume that what works in people without ASD will work in those with a diagnosis.

https://www.ncbi.nlm.nih.gov/pubmed/32341146

https://www.ncbi.nlm.nih.gov/pubmed/32188502

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The latest on marijuana and autism across the globe

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Since the ASF policy statement on marijuana for the treatment of ASD was published this summer, there have been some new scientific studies that may be of interest to families.  As it turns out CBD has opposite effects in the brains of people with autism compared to those without autism, meaning that it is absolutely essential that more research is done specifically in people across the spectrum in ASD.  Also, early studies in Israel and Brazil are showing some positive effects on behavior, but they are open label non controlled compassionate use basis studies, which in encouraging, but the science needs to be more rigorous and more studies need to be done in people with autism using standardized autism assessments if any progress is to be made.  Luckily a new study at NYU is enrolling for just that approach.  Please contact Latoya.King@nyulangone.edu if you want to learn more about that.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6732821/

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6784992/

https://www.ncbi.nlm.nih.gov/pubmed/31736860

https://www.ncbi.nlm.nih.gov/pubmed/30382443

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6336869/