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.pdf
Podcast: How many people can be described as having “profound autism”?
On this week’s podcast, 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/
In this week’s podcast, 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.
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.
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:
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. Listen to this week’s podcast here.
https://journals.sagepub.com/doi/full/10.1177/07067437221082854
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 Listen to the podcast here.
To read the paper, click here: https://pubmed.ncbi.nlm.nih.gov/36804771/
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. Listen to the podcast here.
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. Listen to the podcast here.
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 is 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/pablid and listen to the podcast.
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/
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. Listen to the podcast and check out the ASDQ here! It’s open source!
References below:
https://pubmed.ncbi.nlm.nih.gov/36670671/