The latest autism research news stories with ASF Chief Science Officer Alycia Halladay
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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
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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:
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This year’s Day of Learning was a huge success, with topics ranging from biological sex differences to mobile technologies all the way to the importance and documented value of leisure activities in people on the spectrum. the speakers included a discussion of the IACC, sex differences, the value of prevalence data, mobile technologies, leisure activities, and a recognition of two advocates who made or make a difference in families: Samantha Els and Suzanne Wright. Listen to this week’s podcast for a quickie, but don’t let it prevent you from watching the longer videos, a link to which can be found below
www.babynavigator.com
www.autismnavigator.com
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Have you ever heard of an initiative called “Autistic Adults and other Stakeholders Engaged Together”? If you have, you know their goal is to ensure that autistic perspectives are included in future scientific research. They recently published an article that summarized the research that autistic people feel is critical, and what is missing, and what needs to be done. They concluded most of the research done so far is applicable to males without intellectual disability. That needs to change. Speaking of adults, how many adults are autistic? Is it 5 million? Maybe, maybe not, but it is still unclear even after a recent publication. Listen to hear more.
To learn more about AASET click here
https://www.ncbi.nlm.nih.gov/pubmed/32390461
https://link.springer.com/content/pdf/10.1007/s10803-020-04494-4.pdf
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On Thursday the 26th, the Centers for Disease Control released new prevalence numbers: the prevalence of ASD has jumped from 1 in 59 to 1 in 54 kids who are 8. They also revealed prevalence numbers in 4 year olds. On this week’s podcast. CDC epidemiologist Dr. Matthew Maenner (and ASF class of 2010 predoctoral fellow) explains the numbers, where they came from, what they mean and where the trend in prevalence numbers is going. Shockingly, even though the numbers keep going up, some people are not getting an autism diagnosis when they should.
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Two studies missed last year (sorry) but are of importance to the autism community include a modified version of Cognitive Behavioral Therapy to treat anxiety, which was adapted and updated for people with ASD. It also works better than traditional CBT, which is good news for the 80% of people with ASD that also suffer from anxiety. Also, in recognition of MLK day today, the CDC released information last year that shows that 1/4 of those that they counted in their prevalence numbers were missed by schools or other health care providers. Unfortunately, those who were black or hispanic were more likely to be those that were missed but still met criteria. This just shows that educators have to do better in helping those with ASD from all racial and ethnic backgrounds.
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This week’s podcast is dedicated to the “T” in LGBTQ – trans. Several studies over the past few years have linked higher rates of gender variance in people with autism and higher rates of autism traits in those who are trans. Why? Are they biologically or psychologically linked or both? This is important for understanding, not treatment or intervention. This week’s podcast celebrates trans people who are also autistic.
https://www.ncbi.nlm.nih.gov/pubmed/30547258
https://www.ncbi.nlm.nih.gov/pubmed/29752630
https://www.ncbi.nlm.nih.gov/pubmed/30920347
https://www.ncbi.nlm.nih.gov/pubmed/23864402
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You may have heard on the internet that a new “radical” treatment leads to a “50% reduction” in autism symptoms. This radical treatment is fecal transplants, which is taking the bacteria from the feces from one person and putting them in another person. This is a still experimental treatment, and while the microbiome should be researched more in regards to its relationship to autism, there might be a less invasive way to alter the microbiome which could stand up to the rigor of a well designed trial. Also this week, new prevalence data on 4 year olds across multiple years. Did it change across time, and is it different from 8 year olds, and why is this difference important?
https://www.ncbi.nlm.nih.gov/pubmed/30967657
https://www.ncbi.nlm.nih.gov/pubmed/30973853
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There were a number of exciting advances in scientific understanding autism in 2018. These include things that we know to be true, and know to be not true. Researchers made progress in identifying subgroups of ASD, defining biological markers, and developing interventions. There were also research that demonstrates that while autism is a spectrum itself, it is also part of a bigger spectrum of neurodevelopmental disorders from anxiety to ADHD to OCD. Therefore, the approaches to these other conditions may be applicable to ASD. In addition, there may be more similarities than differences in the biological features of these conditions.
This is just a sampling of the exciting research presented on this year’s Year in Review. You can also read the full summary, complete with references, HERE.
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This week’s headlines were focused on the new prevalence numbers of 1:40. They were not calculated using the same method as the 1:59 number, so should not be compared. In addition to looking at just prevalence, this survey identified a major problem for families, which is unmet mental health needs. Those with autism have higher unmet mental health needs than those with ADHD, anxiety or depression. Again, there is something unique about an autism diagnosis which poses a challenge to accessing care. In addition, a new summary paper outlined what needs to be done to better study regression in autism. The rate may be higher than you think if a new definition of regression is used.
https://www.ncbi.nlm.nih.gov/pubmed/30478241
https://www.ncbi.nlm.nih.gov/pubmed/30475449