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379 - Research for the end of Autism Action Month
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- 379 - Research for the end of Autism Action Month
In honor of the last week of Autism Awareness/Acceptance Month, we review two new scientific findings that call for more awareness and action, and less acceptance of the status quo. First: sex differences in autism are not well understood, and as it turns out, the influences on a diagnosis are different. Males have a higher rate of heritability compared to females. Second, those with rare genetic disorders have very few options for treatment, but a new study promises hope for more personalized approaches. The researchers use Timothy Syndrome as an example of how cells can start to function properly through a targeted approach which focuses on a small part of a gene. This is potentially life saving for individuals with this disorder.
https://www.ncbi.nlm.nih.gov/pmc/articles/pmid/38630491/
https://www.nature.com/articles/s41586-024-07310-6Sun, 28 Apr 2024 - 14min - 378 - Machine Learning in Autism, Explained
Thank you to Dennis Wall from Stanford University for explaining what Machine Learning is, how it’s related to Artificial Intelligence (today’s four buzz words) and how these new technologies are helping families get a diagnosis. He talks about the overall goals of these techniques, highlighting Cognoa’s CanvasDx to provide remote diagnoses to potentially reduce the waiting lists for families.
Home
Mon, 22 Apr 2024 - 39min - 377 - The 2024 Day Of Learning Quickie
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/respondSun, 07 Apr 2024 - 17min - 376 - The Trouble with Transitions
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-kitMon, 01 Apr 2024 - 11min - 375 - “What is Profound Autism?” with Matt from the podcast Behavioral Observations
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
Mon, 25 Mar 2024 - 52min - 374 - Missed the Meeting on Language in Autism? Listen to this podcast
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.
Mon, 18 Mar 2024 - 21min - 373 - How does autism prediction work?
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/Mon, 11 Mar 2024 - 10min - 372 - What is the IACC and what do they do?
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/tCy86LkSun, 25 Feb 2024 - 48min - 371 - Are new ICD-11 criteria for an autism diagnosis too vague?
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-ySun, 11 Feb 2024 - 31min - 370 - Learn about your infant’s development from your own home
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.
ChildrenHelpingScience
sites.duke.edu/risebatterySun, 04 Feb 2024 - 19min - 369 - How do you solve a problem like aggression?
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/Sun, 28 Jan 2024 - 12min - 368 - Speak now
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
Sun, 21 Jan 2024 - 22min - 367 - How to predict severe and dangerous behavior
On the first podcast of 2024, we describe a new paper in the Journal of the American Medical Association or JAMA which uses physiological measurements like heart rate and skin conductance to predict severe and dangerous behaviors, specifically aggression. If aggression can be predicted, it might be able to be prevented. It turns out aggression can be predicted up to 3 minutes before an episode occurs, in the future these measures can be used to possibly redirect aggression. In a separate study, the issue of stigma is addressed. There is an intense debate over “person first” vs. “identity first” language in autism, promoting recommendations of using one over the other because fear that person first language promotes stigma against autism. A new study shows that there is no added prejudice or fear using either person first or identity first language, but the stigma associated with schizophrenia is worse than it is for autism. What contributes to stigma? There is a wide range of experiences and perceptions of autism that need to be addressed. It’s not as simple as the language used.
https://pubmed.ncbi.nlm.nih.gov/38127348/
https://pubmed.ncbi.nlm.nih.gov/37965364/
Mon, 08 Jan 2024 - 14min - 366 - The ASF Year End Review of Science
Just three days before 2024, ASF provides a summary of the the highlights of scientific discoveries and how they have translated into tools families can use. They include ways to speed up diagnosis and reduce waitlists, study of the brains in females and clinical recommendations for helping autistic females at birth, evidence of better practices around intervention and supports, and a review of the numbers of people who have a diagnosis. It isn’t comprehensive and if something was missed, our apologies, but the summary is 20 minutes.
You can read the text here: https://autismsciencefoundation.org/2023-year-end-review/Wed, 27 Dec 2023 - 22min - 365 - What’s the latest on minocycline for autism?
This week’s podcast re-explores a question about a potential therapy for autism – minocycline. Minocycline is an antibiotic used to treat a number of different infections and some anecdotal reports have linked it to an improvement of autism. This has led to some experimental trials on minocycline, with inconclusive results. This week, a multisite study showed NO effects of minocycline for autism features or outcomes, but that doesn’t mean it is NOT a great antibotic. If you need it, use it! Also, do autistic people spend too much time on their screens? Well, they seem to spend more time on devices and screens, but it might all be bad. Listen to the podcast for more information on this.
https://link.springer.com/article/10.1007/s10803-023-06132-1
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10709772/?report=printableSun, 17 Dec 2023 - 12min - 364 - In support of AFAB
A recent publication in the Lancet was dedicated to clinical recommendations to support autistic females at birth. Because more males than females are diagnosed with autism, their needs are often misunderstood, misinterpreted, or just ignored. Researchers, clinicians, scientists, parents and self-advocates from around the world joined together to identify those needs and propose solutions that can be implemented in everyday care. To read the article in it’s entirety, click here: https://authors.elsevier.com/c/1i5LV8Mut2MzvbSun, 03 Dec 2023 - 52min - 363 - Waitlists for waitlists
Everyone who has looked for support for autism spectrum disorder is familiar with waitlists. Waitlists for evaluation, diagnosis, intervention, consultations and referrals. These waitlists prevent important opportunities for services and many groups developing technologies, policies, and approaches to reduce the waitlists or work around them. On this week’s podcast, we talk to Dr. Sharief Taraman from Cognoa to hear about their recent study on the scope of the problem on waitlists, what causes them, and how digital therapeutics may help them.
Waitlist Crisis Report
Sun, 19 Nov 2023 - 51min - 362 - Nobody ever talks about catatonia
Nobody ever talks about catatonia in autism. This podcast explores the symptoms of catatonia, how to measure it, what parents should know about tracking the symptoms, what the treatments are, and what the causes are. Dr. Martine Lamy from Cincinnati Children’s Hospital explains her work looking at genetic causes in those with catatonia and neurodevelopmental disorders. It’s important to do genetic testing on all individuals who present with catatonia because this information led to better treatments in some people. Identifying a genetic cause of not just catatonia but also neurodevelopmental disorders like ASD gives families a community but also allows them to identify more targeted interventions.
https://pubmed.ncbi.nlm.nih.gov/37864080/
https://pubmed.ncbi.nlm.nih.gov/37642312/
https://pubmed.ncbi.nlm.nih.gov/36708735/
https://globalgenes.org/rare-disease-patient-services/Mon, 06 Nov 2023 - 24min - 361 - Contemplating “syndromic autism”
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:
Sun, 22 Oct 2023 - 38min - 360 - Little Brains Answer Big Questions
This week we talk to Sergiu Pasca from Stanford University. He has revolutionized the field of understanding the field of brain development in neurodevelopmental disorders and just published a new study which examined the genetic influence of brain assembly. The way he does this is quite remarkable. His lab uses assembloids, which are many many many stem cells which form into a tiny brain. He explains what an interneuron is, why it is important for brain function, and how genetics can influence how these neurons work. This way the development of the brain from the first cell can be tracked and even manipulated to understand what happens in autism, and what therapies might be the most helpful to target these interneurons. Thank you Dr. Pasca.
Open access! https://pubmed.ncbi.nlm.nih.gov/37758944/Sat, 14 Oct 2023 - 34min - 359 - Resilience and heterogeneity in ASD
Everyone knows that every person with autism has their own unique strengths and challenges. Autism is heritable, and there are over 100 genes associated with autism. There are also an unknown number of environmental factors influencing outcome, so the heterogeneity is not necessarily surprising. But why would two people with the same genetic mutation have variable outcomes? Researchers led by the Institut Pasteur in France looked at the range of outcomes in people with a rare genetic mutation associated with autism, focusing on those without an autism diagnosis. This week’s podcast is an interview with the lead author of the paper, Thomas Rolland, PhD from France. The presence of the variants in those without ASD were associated with lowered cognitive ability, education level and employment status. The bottom line of these finds are that genes affect proteins which form the brain and control brain function. However, there are multiple factors that influence outcome. Some of them may be sex or gender, prenatal exposures. It’s not just one thing, there are many things influencing an autism diagnosis.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10353945/pdf/41591_2023_Article_2408.pdfMon, 02 Oct 2023 - 34min - 358 - All who wander are not lost. But many are lost and need help.
In recognition of September 26th, this podcast explores one of the more dangerous issues in autism: wandering. But it’s really not wandering in the traditional sense. Wandering in autism mostly means running off, bolting, deliberately with intent and without permission. Obviously this leads to some very dangerous situations for people on the spectrum. How can it be mitigated or understood? Some behavioral therapies are helpful, but new technologies have allowed for more options to bring back loved ones that have run off unexpectedly. Finally, the community needs to be better aware of possible stressors or triggers that trigger a wandering episode and work together with families to prevent running off. This problem is not caused by one thing, and the community needs multiple solutions to keep kids and adults safe.
www.september26.org
https://pubmed.ncbi.nlm.nih.gov/37492814/
https://pubmed.ncbi.nlm.nih.gov/32576789/Mon, 25 Sep 2023 - 11min - 357 - Now you know the reason for decades of eye tracking research
Can biomarkers that measure things like visual social attention be a good proxy for an in person behavioral diagnosis? Why would this be important? This week’s podcast explores two new studies the the Journal of the American Medical Association that show a simple device called EarliPoint can be used to shorten the wait times to receive a diagnostic evaluation. Currently autism can be diagnosed at 18 months but most families do not get into an appointment until 4-5 years of age. That can change. Families were able to easily complete it, it predicted things like not just a diagnosis but behavioral features and cognitive ability. It’s been deployed in 6 speciality centers, been approved by the FDA, and hopefully coming to a clinic near you soon.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10481232/
https://pubmed.ncbi.nlm.nih.gov/37668621/Sun, 10 Sep 2023 - 22min - 356 - Support for Siblings during COVID
Everyone needed support during the pandemic, but families affected by autismneeded special support. This included siblings. Researchers at Massachusetts General Hospital tried out an intervention around stress and anxiety reduction in siblings in 2020. Not only was it liked, it worked. It didn’t completely eliminate stress and anxiety, nothing would, but it did help siblings manage a little better. Can it work outside the pandemic? There are certainly other situations where siblings could use a little more support.
https://pubmed.ncbi.nlm.nih.gov/36460184/
https://link.springer.com/article/10.1007/s10803-022-05500-7
https://onlinelibrary.wiley.com/doi/10.1002/aur.2987
https://onlinelibrary.wiley.com/doi/10.1002/aur.2987#aur2987-bib-0032Mon, 28 Aug 2023 - 9min - 355 - Tik-Tok for autism information? Nope
In a highly discussed paper, researchers from Drexel University report their findings on a scientific and methodologically rigorous study on the accuracy of information posted on the social media platform Tik-Tok. They also discuss where the information comes from and how it is viewed. The accurate and inaccurate posts get “liked” equally, meaning they are taken just as seriously. There are billions of inaccurate posts being viewed, and misinformation spread. On this week’s podcast, all four authors of this paper summarize what they found and what families should know.
https://pubmed.ncbi.nlm.nih.gov/37544970/
Sun, 20 Aug 2023 - 41min - 354 - Suicide, self-harm and genetics in autism
This week’s podcast covers two new papers of interest to the autism community. First, another study showing increase in self harm and suicide in those with autism – no new news there – but a new discovery this week showed a vulnerability of females with a diagnosis. The study also explores the lower rate of suicide in those with IDD but higher rate of self harm in this same group. Second, the mystery of autism genetics is slowly unveiled. Why is rare variation so influential in an autism diagnosis? As it turns out those with rare variation also have common variation, piling on the genetic liability in this group. Common variation is also uniquely linked to language delay in autism, so is this a core feature? Links below are the scientific articles as well as resources to support those dealing with mental health problems in the autistic community.
Mental health links:
https://vkc.vumc.org/assets/files/resources/mental-health-toolkit.pdf
https://www.camh.ca/-/media/files/cundill-centre/depression-and-autism-full-pdf.pdf
https://www.yorku.ca/health/lab/ddmh/wp-content/uploads/sites/407/2021/04/Mental-Health-Literacy-Guide-for-Autism_Section-9.pdf
https://www.azrieli-anc.com/autism-mental-healthhttps://www.autism.org.uk/advice-and-guidance/topics/mental-health/suicide#How%20do%20I%20get%20help%20and%20support
Articles:
https://jamanetwork.com/journals/jamanetworkopen/fullarticle/2808056
Genetics study is OPEN ACCESS: https://www.pnas.org/doi/abs/10.1073/pnas.2215632120?url_ver=Z39.88-2003&rfr_id=ori%3Arid%3Acrossref.org&rfr_dat=cr_pub++0pubmedSun, 13 Aug 2023 - 14min - 353 - Top reasons to study the autistic brain
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/Mon, 07 Aug 2023 - 18min - 352 - “Emergent and Transactional” with Dr. Andrew Whitehouse
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/Mon, 31 Jul 2023 - 43min - 351 - What doesn’t kill you makes you stronger
This week’s podcast explores new evidence that exercise produces longer term improvements in coordination and motor skills. Parents can play a big role in how these skills are developed over time. Physical exercise also has different effects on the brain in typically developing people than those with a diagnosis.
https://onlinelibrary.wiley.com/doi/epdf/10.1002/aur.2969
https://onlinelibrary.wiley.com/doi/epdf/10.1002/aur.2977
Mon, 03 Jul 2023 - 14min - 350 - The importance of a childhood diagnosis
Two recent papers suggest that a childhood diagnosis of ASD is important for adulthood quality of life and well being. But another one points out that it isn’t the only thing, or even the primary factor, involved in improved quality of life and well-being as autistic adults age. There are others, like comorbid mental health problems, demographic factors like gender and current age. These studies were conducted by autistic researchers and did an amazing thing – one tried to replicate the other. The media got the point of these findings wrong (shocker) so today’s #ASFpodcast explains what they mean.
https://journals.sagepub.com/doi/pdf/10.1177/13623613231173056
https://journals.sagepub.com/doi/pdf/10.1177/13623613221086700?casa_token=Pt_EcbUzuDQAAAAA:_qVIXsQGRxWgoSOp4-kpLdohAr6CiB5lFYbhx8kK5omusM4rfHTjeyuzSLbxPh1OFftAc4j8BkuzCA
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9296439/Sun, 25 Jun 2023 - 12min - 349 - Juneteenth, 2023
The disparity in diagnosis between Black kids and white kids is narrowing, but not by luck or coincidence. Based on previous research, clinicians are altering their professional training and their outreach to make sure more Black families are diagnosed and receive interventions. On today’s podcast, we highlight a recent study that focused on different ways to lower the age of diagnosis and improve access to early intervention in Black families. This intervention improved cognitive outcomes in Black kids.
https://pubmed.ncbi.nlm.nih.gov/36443922/
https://pubmed.ncbi.nlm.nih.gov/37196781/Mon, 19 Jun 2023 - 8min - 348 - Following our trajectory
Compared to other types of research, there are so few studies that look at three time points in the same person with autism over their live to better understand groups and predict outcomes. What is missing? What do families need? What’s there and what could be done differently to get at the answers that will help families? This week we talk to @StevenGentles from McMaster University who led a review of this research and what it will add to the science. You can read the article open access here: https://journals.sagepub.com/doi/full/10.1177/13623613231170280?rfr_dat=cr_pub++0pubmed&url_ver=Z39.88-2003&rfr_id=ori%3Arid%3Acrossref.orgSun, 11 Jun 2023 - 23min - 347 - Uncovering the digital underground
Digital therapeutics may very helpful in helping families and individuals on the spectrum. What are they? How can they be used? This week’s #ASFpodcast talks to Lani Hessen from the Digital Therapeutics Alliance who is holding a summit this week in Washington DC. There is technology that is already used to help those on the spectrum, and those that can be easily adapted or implemented in those with a diagnosis or their families. We want to hear about YOUR experience with digital technologies. Tell us more in the comments.
www.dtalliance.orgSun, 04 Jun 2023 - 20min - 346 - Happy Pride 2023
With just a few weeks to go until June, this week’s podcast is a short summary of the prevalence of transsexuality in the autism community and how many people are autistic in the trans community. More importantly, there are guidelines about the identification and care for those who have these co-occurring conditions. The references mentioned are below:
https://pubmed.ncbi.nlm.nih.gov/36996732/
https://pubmed.ncbi.nlm.nih.gov/36721890/
https://pubmed.ncbi.nlm.nih.gov/36358354/
https://www.tandfonline.com/doi/full/10.1080/15374416.2016.1228462
https://4w.pub/autism-puberty-gender-dysphoria-view-from-an-autistic-desisted-woman/amp/Sun, 21 May 2023 - 15min - 345 - attention attention…this is the INSAR 2023 summary
Last week in Stockholm, Sweden, 2200 researchers and scientists working to understand and help those on the spectrum, met to share their most recent findings and exchange ideas. What were the main takeaways as ASF saw them? We cover why some autistic people don’t want genetics to be studied, how to better engage families with IDD and who are non-speaking, females, adults, international studies and yes, diversity. The program book was released a day before the meeting and can be found here: https://cdn.ymaws.com/www.autism-insar.org/resource/resmgr/docs/annualmeeting/insar2023_program_book.pdfSun, 14 May 2023 - 23min - 344 - Sperm
The title gets you, right? Well, on this week’s #ASFpodcast we report on a new study that examines epigenetic profiles of sperm and how they related to child outcomes. Do some of the marks on bio-dad’s sperm match to those found in kids with ASD? what about genes related to autism? Also, can parents be good proxies of their child’s intellectual ability? For the most part yes, but sometimes they tend to overestimate this ability. This means they are good, but not perfect reporters. How could they be if the child has a severe intellectual disability?
https://pubmed.ncbi.nlm.nih.gov/37097835/
https://pubmed.ncbi.nlm.nih.gov/37100868/Sun, 30 Apr 2023 - 13min - 343 - How many people can be described as having “profound autism”?
Quick answer: 26.7%. But what is “profound autism” and why is this label necessary? Have the rates of profound autism changed over time? How many do not have profound autism and are their needs different and how? Listen to this week’s ASF podcast and read the paper here: https://autismsciencefoundation.org/wp-content/uploads/2023/04/CDC-Profound-Autism-Statistics_ASF-Copy.pdfSun, 23 Apr 2023 - 12min - 342 - The CDC speaks on prevalence, and we listen.
This week we conduct an interview with Michelle Hughes, PhD, epidemiologist with the CDC, who answers all of our questions about how many people have autism, how they are counted, what has changed since the last count and why the CDC are counting more kids than they were 10 years ago.
You can read more about her here: https://www.linkedin.com/in/michellemergler/
Here is a link to the 8 year old counting study: https://pubmed.ncbi.nlm.nih.gov/36952288/
Here is the follow up to when they turned 16: https://pubmed.ncbi.nlm.nih.gov/36849336/Sun, 16 Apr 2023 - 20min - 341 - When it comes to intervention, earlier is better
This week, we talk to Whitney Guthrie from Children’s Hospital of Philadelphia who spent the last 6 years conducting the gold-standard randomized control trial that demonstrates intervention for social communication skills at 18 months shows greater effects than intervention starting at 27 months. If you wanted evidence that earlier is better, here it is! Interventions and supports are important at any age, but the critical window of development between 18-27 months is particularly important for long term development.
https://pubmed.ncbi.nlm.nih.gov/36922406/Sun, 09 Apr 2023 - 19min - 340 - The 2023 Day of Learning Quickie
What do anxiety, prevalence, ketamine, other neurodevelopmental disorders, siblings, genetics, brain imaging and the autistic researcher committee at INSAR all have in common? They were all topics at the last Day of Learning. You can hear a 20 minute summary of the talks on this week’s #ASFpodcast.Sun, 02 Apr 2023 - 23min - 339 - One in 36 and what it predicts
The CDC released data from the Autism and Developmental Disabilities Monitoring Network (ADDM) on Thursday. In the past 2 years, the prevalence of autism has increased about 20%. Why? Are there more new cases or is diagnostic practices improving? For 20 years there has been fewer Black and Hispanic kids diagnosed. Is that still the case? Listen to this week’s #ASFpodcast to hear some early thoughts, the CDC will join us for an interview on April 20th:
https://www.cdc.gov/mmwr/volumes/72/ss/ss7202a1.htm
https://www.cdc.gov/ncbddd/autism/data.htmlSun, 26 Mar 2023 - 8min - 338 - Social Media is No Substitute for Clinical Expertise
TikTok is overtaking the internet and many are using this platform to learn about a variety of psychiatric illnesses and psychological problems. But how accurate are these videos in sharing medical information? Could they be causing things like tics? Do they influence individuals to self-diagnose and cause mis-diagnosis? There is a new phenomenon labeled “munchausen by internet”, and while some of the videos might be helpful in raising awareness, others are just spreading lies and causing psychiatric problems. In other words: be careful about TikTok. If a social media platform shares videos that tell you to eat laundry detergent, maybe you should not listen to everything they say.
https://journals.sagepub.com/doi/full/10.1177/07067437221082854
https://pubmed.ncbi.nlm.nih.gov/35473358/Sun, 19 Mar 2023 - 11min - 337 - The Science of Screeners for ASD
Screening for autism is meant to cast a broad net to gather those who show enough features to be included for a full diagnostic evaluation. The most common of these tools is the MCHAT – the Modified Checklist for Autism in Toddlers. An author of the MCHAT, Diana Robins, and a colleague, Andrea Wieckowski and others gathered over 50 studies (English and other languages) in different types of samples (high likelihood and low likelihood) to determine how the MCHAT was doing in terms of finding infants with autism as well as excluding those without autism. It also touched on how well primary care doctors were doing in administering this tool. If you want to see the MCHAT for yourself or take it for your child, there is a FREE website, click here:https://mchatscreen.com
To read the paper, click here: https://pubmed.ncbi.nlm.nih.gov/36804771/Sun, 12 Mar 2023 - 38min - 336 - Is it co-morbid or co-occurring?
A new paper in Translational Psychiatry this week outlines the reasons why some conditions that occur with autism are actually co-morbid, and not co-occurring. The podcast will break down clues on why sometimes they are co-morbid, and present an argument on why they are important in understanding the vast heterogeneity of autism.
https://onlinelibrary.wiley.com/doi/10.1002/aur.2898
https://www.nature.com/articles/s41398-023-02374-wSun, 05 Mar 2023 - 12min - 335 - Animal models can explain heterogeneity
Just like no two people are the same, no two strains of mice are the same. Using dozens of different strains of mice with and without a genetic mutation associated with autism called CHD8, researchers at University of Southern California showed great variability in the effect of this mutation on behaviors associated with neurodevelopmental disorders. This can reflect the great differences across people with autism and even people with a rare genetic syndrome associated with autism. It isn’t just one gene, it’s the other hundreds of genes that can contribute to susceptibility or resilience to different features of NDDs. One thing this study did not do was overlay environmental factors, which will also significantly influence the variability seen across the different background genetics in these mice.
https://pubmed.ncbi.nlm.nih.gov/36738737/Sun, 26 Feb 2023 - 14min - 334 - What’s Quality of Life Got To Do With it?
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/pablidSun, 05 Feb 2023 - 11min - 333 - A potential biomarker to AID, not MAKE, a diagnosis
The media has just called another biological marker a “diagnostic test”, when in this case, it was always intended to be an aid, not a test itself. It involves using baby hair strands to look a variation in metabolism of certain chemical elements across time. Remarkably, it showed similar results in autistic children in Japan, the US and Sweden. It’s not ready to be used as a diagnostic test, so what is it supposed to do? Listen to an interview with the inventor and researcher, Dr. Manish Arora from The Icahn School of Medicine at Mt. Sinai School here.
The full article (open access) can be found here: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9740182/Mon, 30 Jan 2023 - 35min - 332 - The true title should be: “A new open source screening tool to help detect autism”
Many of the existing tools to identify autism cost money or are not specific for ASD, and they are hidden behind paywalls and are hard to obtain. A group of scientists led by Tom Frazer at John Caroll University put together a 39 questionnaire called the Autism Symptoms Dimensions Questionnaire to be filled out by parents of children. It’s free and open source! But that’s just the first step. The media got the intent wrong, yet again.
It should not replace a full diagnosis. Autism is complex, and even those with genetic forms of autism show heterogeneity in symptoms. They each need comprehensive evaluations. But this is a good start. Check it out here!!! It’s open source:
References below:
https://pubmed.ncbi.nlm.nih.gov/36670671/
https://onlinelibrary.wiley.com/doi/epdf/10.1111/dmcn.15497
https://pubmed.ncbi.nlm.nih.gov/36639821/Sun, 22 Jan 2023 - 11min - 331 - Can you say strengths and deficits at the same time?
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/Sun, 15 Jan 2023 - 36min - 330 - Some important discoveries of 2022
It’s that time! The ASF Year of End Science Wrap-up was published in December, so it’s time to share it on the podcast. We cover everything from parent mediated interventions to genetics and racial and ethnic disparities. You can listen here or read it on the ASF website here: https://autismsciencefoundation.org/autism-research-in-2022/Sun, 08 Jan 2023 - 25min
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