services – ASF Weekly Science Podcasts

You may have heard terms in early intervention like “NDBI” or “Early Start Denver Model” and wondered if there was a difference in efficacy behind all these flavors of toddler interventions. On this week’s podcast, we speak to Dr. Giacomo Vivanti from @DrexelAutism, who combined data from 4 of these interventions across 700 children to see if they found similar or different effects of each protocol. This group of scientists also examined these interventions on the development of spoken language. The results reinforced: 1. the earlier the better when it comes to early intervention, 2. duration of the intervention matters, and 3. focusing on imitation may be a key to helping toddlers talk.

https://pubmed.ncbi.nlm.nih.gov/41264359

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-y

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.

On this day, October 12th, we celebrate Indigenous People’s Day by talking about how many indigenous people have ASD, what services to they receive and what are scientists around the world doing to help them. It’s not enough, but it’s a start.

https://pubmed.ncbi.nlm.nih.gov/32762685/

https://pubmed.ncbi.nlm.nih.gov/31999495/

https://pubmed.ncbi.nlm.nih.gov/31928063/

https://pubmed.ncbi.nlm.nih.gov/19962033/

This week two groups of heroes of autism research published studies that may not be the type of major breakthrough that the media reports on, but they are more important to families:  These studies help translate what works in the research clinic into the community.  Specifically, is it even possible, how, and what do families need to know when they receive an intervention that has yet to be “field tested”.  This is a whole field of research called implementation science, and it deals with how scientists and community services implement what is learned in research settings into real world settings.

https://www.ncbi.nlm.nih.gov/pubmed/31206690 

https://www.ncbi.nlm.nih.gov/pubmed/31241851

Paid support staff are critical to helping individuals at all ages with autism.  Unfortunately, they are mostly poorly paid, and exhibit high levels of burnout.  What psychological constructs are most important, and can they be targeted for services to help provide better services for those with ASD?  As it turns out, more important than preventing burnout is building up psychological capital, which helps deal with the effects of burnout.  In addition, a new important feature of autism has been identified: intolerance to uncertainty.  Previously linked to ASD through anxiety, now it is shown to have direct connections to ASD diagnosis and symptomatology.  Is this a new core feature?

Thank you to Sonia Agarwal, smart, efficient and eloquent ASF summer intern for putting together a summary of resources and services and rights for adolescents and young adults with autism, focusing on those who are not intellectually disabled.  They include resources for transitioning into college and support programs at college, with tips and hints along the way.  Sonia has a younger brother with autism and is committed to helping families access the help they need.

On Thursday, March 30th the Autism Science Foundation held their 4th Annual Day of Learning in NYC.  If you were not able to attend and can’t wait for the videos of the talks, this week’s podcast attempts to summarize what was presented.

A list of the talks are:

David Mandell’s presentation on parent/teacher communication was based, in part, on this publication:  https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4676744/