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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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/
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This week’s podcast explores the question about whether or not it is beneficial or just confusing to teach your child with autism multiple languages, or suppress the use of more than one language at home. Turns out, being bilingual helps with executive functioning (or those with preserved executive functioning can be bilingual), language, and provides benefits in verbal IQ depending on SES. In other words, it’s not harmful, it can be helpful, and those who choose to speak two languages at home should continue to do so if they feel that it is enhancing their child’s learning. More information in the links below:
https://pubmed.ncbi.nlm.nih.gov/35102760/
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On Tuesday, the journal Lancet published a 2+ year long endeavor around understanding the heterogeneity of autism not just in features but in access to services for individuals and families across the world. They called for a stepped care to help individualize and prioritize needs in different individuals based on their needs, not their diagnosis. They also called for the label of “profound autism” which describes individuals with very different outcomes compared to those who have a higher verbal and cognitive ability. Recognizing everyone needs supports and help, the “profound autism” label needs different supports, like different employment situations and different living accommodations. Thankfully, to authors, Dr. Catherine Lord from UCLA and Alison Singer from ASF explain the article and the impact they hope it makes on the field.
The article is open access but you have to register to download a copy, here: https://www.thelancet.com/journals/lancet/article/PIIS0140-6736(21)01541-5/fulltext
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On this week’s podcast, we interview Dr. Giacomo Vivanti from the AJ Drexel Autism Institute who, together with Daniel Messinger from University of Miami, wrote an analysis of how research and intervention have changed since the DSMIII was written 40 years ago. They include theories of the causes of autism, the theories of the deficits and strengths of autism as it has changed over time, as well as intervention styles to meet the expanding understanding of autism. You can read the paper below, but Dr. Vivanti gives a great summary in a 30 minute interview!
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Children and infants who later go on to have an autism diagnosis show impairments in communication. Is there anything that parents can do? Yes! Talk. Talk in complicated sentences. Talk responsively and keep it up. This isn’t always an inherent skill, it’s learned, and in this podcast we talk about the biological basis of why infants with ASD are more sensitive to verbal input, how hyposensory features are involved and what you can do to improve your verbal responsiveness that needs to be different for your child with ASD
https://pubmed.ncbi.nlm.nih.gov/34128355/
https://pubmed.ncbi.nlm.nih.gov/34185234/
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Not all people with autism spectrum disorder are the same, obviously. Are there things that can predict positive outcome? Are they different based on something like cognitive ability? And what determines cognitive ability and how early is it seen? Have other studies lumped all the autisms into one pile which has represented what people along the spectrum at different points actually need? This podcast tackles it all this week.
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The racial and ethnic disparities in the diagnosis of ASD has always been unacceptable, but it’s been hard to figure out. This week, researchers published their findings from a close look at 500 African American families with ASD to understand what the barriers were to a timely diagnosis. The results are not surprising, but they are also alarming. Some of these families may benefit from telehealth in the future. Telehealth is not perfect, but it turning out to be helpful. For example, it may be beneficial in treating insomnia in people with ASD. Delivering cognitive behavioral therapy online resulted in improvements in sleep in adolescents with ASD. It isn’t a panacea, but it seems to be more helpful than people gave it credit for before the pandemic.
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You have spoken, and scientists have listened, to surveys that have asked how you are doing, what your family needs, what is working and what has not worked. Telehealth gets mixed reviews, and kids are suffering from everything from anxiety to OCD. Other results of these surveys are covered in this week’s ASF podcast. Please continue to answer these requests for feedback, because the future of autism interventions, assessments and services depends on them.
https://pubmed.ncbi.nlm.nih.gov/32515992/
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One the surface, symptoms of ADHD and ASD may seem very similar. However, they come from very different places. The genetic and behavioral makeup may be on the same spectrum across the two disorders, but they are actually farther apart than you might think. Dr. Meghan Miller from UC Davis MIND Institute who studies both ADHD and ASD and people with ADHD and ASD explains what those differences and similarities are, how to make the right diagnosis, and what’s on the horizon for treatments for ADHD in people with ASD.
https://www.ncbi.nlm.nih.gov/pubmed/31974800