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Are new ICD-11 criteria for an autism diagnosis too vague?

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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

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Waitlists for waitlists

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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
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How in research helping indigenous families with ASD?

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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/

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If you can make it there, you can make it anywhere: preparing early interventions for the community

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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

 

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Supporting the support staff, at least a first step

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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?

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Resources and Services for Adolescents and Young Adults

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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.

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The ASF Day of Learning Recap

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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:

  • Autism Research: Where Are We Now? – Dr. Wendy Chung (Simons Foundation)
  • Housing Options for Adults with Autism – Amy Lutz (EASI Foundation)
  • Improving Communication Between Parents of Children with Autism and Teachers – Dr. David Mandell (University of Pennsylvania)
  • Developing Clinical Biomarkers – Dr. James McPartland – (Yale University)
  • Understanding Modifiable Autism Risk Factors – Dr. Craig Newschaffer (Drexel University)
  • Helping People with Autism Develop Practical Skills – Dr. Celine Saulnier (Emory University)
  • New Technologies to Improve Autism Diagnosis – Dr. Robert Schultz (Children’s Hospital of Philadelphia)
  • Understanding the Female Protective Effect – Dr. Donna Werling (University of California, San Francisco)

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