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Catching up with CANDID

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In part 2 of the GI series in ASD, a new paper in the Journal of Nutrition and Gastroenterology describing the www.candidgi.com meeting is described. While sometimes doctors may be know-it-alls, sometimes they do not know-it-all and need experts to advise them, especially when they encounter individuals who may be hard to diagnose and treat. Those with intellectual disability and who are non-speaking may pose specific challenges in diagnosing medical issues, including GI problems. This podcast describes the symptoms that may be obvious, some that are not so obvious, and what GI doctors need to do to help these families.

https://pubmed.ncbi.nlm.nih.gov/37323113

www.candidgi.com

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Autism Self-Diagnosis Tools

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Autistic individuals are turning to self-diagnosis to explain their autism features, sometimes based on better awareness, sometimes based on what they see on social media. But how accurate are these autism diagnostic tools? They range anywhere from tik-tok videos all the way to a tool called the RAADS-R which has been described as a valid diagnostic measure. Unfortunately, as discussed by scientist Alexandra Sturm who looked closely at what this tool measures, it’s probably not a true diagnostic measure. However, diagnosis for adults is hard to obtain, Dr. Sturm provides suggestions on what to do if you are curious about an autism diagnosis and don’t know where to turn.

The RAADS can be found here: https://embrace-autism.com/raads-r/

https://www.tandfonline.com/doi/full/10.1080/09515089.2024.2327823

https://pubmed.ncbi.nlm.nih.gov/38305196/

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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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Top reasons to study the autistic brain

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There are dozens of good reasons why scientists need to study the brains of people with autism. One is to understand what happens in the brain as people with autism get older and see how the brain changes over time. Another is to identify mechanisms of autism to help all neuroscientists figure out how the brain works. A third is improve medicine by determining what helps what people at what age. Scientists @UCDavis, @Penn and @UCLA examined the individual brain cells of people with autism to address these three questions, revealing that the autistic brain shows some similarities to brains of people with Alzheimer’s Disease. In addition, inflammation seen in the brain may be caused by too much activity of cells talking to each other. Studying the brains of people with autism is essential to better understanding and is made possible by families who are committed to research. www.autismbrainnet.org.

https://pubmed.ncbi.nlm.nih.gov/36862688/

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“Emergent and Transactional” with Dr. Andrew Whitehouse

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This week’s ASF podcast returns with a special guest: Dr. Andrew Whitehouse from the University of Western Australia talks about a new unifying theory of the spectrum of autism symptoms and features. It’s called “emergent and transactional”, and while the original author was Dr. Jonathan Green from the UK, Dr. Whitehouse wrote a clear explanation of what it means. He also provides his perspective on the broad spectrum of experiences, feelings and priorities in the autism community and how this new theory might bring together at least some of the views. We also discuss how courage and humility are needed by the entire community to reduce the vitriol.

https://pubmed.ncbi.nlm.nih.gov/37434277/

https://pubmed.ncbi.nlm.nih.gov/37438108/

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Can you say strengths and deficits at the same time?

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People tend to go towards a “strengths only” or “weaknesses only” approach to describing autism. But even if you think about a single aspect of autistic challenges – social communication – autistics can show both. How can you measure this, and even more importantly, document it to play to someones strengths while addressing their impairments at the same time? Special guests Dr. Matthew Lerner and Jacquelyn Gates from Stony Brook University explain how this can be done by clinicians.

https://pubmed.ncbi.nlm.nih.gov/36573397/

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Genetics does not equal eugenics

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Sometimes when the autism community hears the words “genetics research”, it conjures up images of using genetics to eliminate people with autism. In fact, that’s not the goal of genetics research, nor is it even possible. Recently, several new studies were publish which illustrate how genetics can be used to help people understand their diagnosis, and receive more targeted supports. Special guest Jonathan Sebat from UCSD provides perspective on these findings and why genetics research is misunderstood.

https://pubmed.ncbi.nlm.nih.gov/35654973/

https://pubmed.ncbi.nlm.nih.gov/35654974/

https://www.genome.gov/event-calendar/irreducible-subjects-disability-and-genomics-in-the-past-present-and-future

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Is anxiety related to autism, and where is it in the brain?

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Anxiety is common in people with autism – but is is different than other types of anxiety or similar? Is it part of the autism phenotype? When does it start and what triggers it? Two new studies which use a longitudinal design and examine the links between autism features, anxiety symptoms and brain development are summarized this week. It shows that the amygdala is important, that some features of anxiety are core to ASD and some are separate, and it is related to autism features like insistence on sameness. This has implications for how anxiety is diagnosed and treated in those with ASD.

https://pubmed.ncbi.nlm.nih.gov/35871413/

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9116934/?report=printable

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Autism means different things to different people

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At this year’s International Society of Autism Research meeting in Austin, TX, there was a variety of themes explored. From early development and milestones, to intervention and supports, to different features like sensory issues, treatment, and how to solve the problem of heterogeneity. It comes down to this: Autism means different things to different people. This is just a small subset of everything that was presented at #INSAR2022 and I hope that if you want to see more, you advocate to have the presentations posted online or even have the program book made available publicly. In the meantime, enjoy the 30 minute summary.

www.autism-insar.org