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

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

Waitlists for waitlists

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.

The importance of a childhood diagnosis

Two recent papers suggest that a childhood diagnosis of ASD is important for adulthood quality of life and well being. But another one points out that it isn’t the only thing, or even the primary factor, involved in improved quality of life and well-being as autistic adults age. There are others, like comorbid mental health problems, demographic factors like gender and current age. These studies were conducted by autistic researchers and did an amazing thing – one tried to replicate the other. The media got the point of these findings wrong (shocker) so today’s #ASFpodcast explains what they mean.

https://journals.sagepub.com/doi/pdf/10.1177/13623613231173056

https://journals.sagepub.com/doi/pdf/10.1177/13623613221086700?casa_token=Pt_EcbUzuDQAAAAA:_qVIXsQGRxWgoSOp4-kpLdohAr6CiB5lFYbhx8kK5omusM4rfHTjeyuzSLbxPh1OFftAc4j8BkuzCA

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9296439/

How many people can be described as having “profound autism”?

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

A potential biomarker to AID, not MAKE, a diagnosis

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/

The true title should be: “A new open source screening tool to help detect autism”

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/

https://onlinelibrary.wiley.com/doi/epdf/10.1111/dmcn.15497

https://pubmed.ncbi.nlm.nih.gov/36639821/

ADHD and ASD diagnosis both on the rise. Coincidence or commonalities?

Like ASD, the prevalence of ADHD has increased significantly in the past 2 decades. A critical analysis examines the factors, and many of them can be applicable to the increase in the rise of autism diagnoses: increased diagnosis in adults, looser diagnostic criteria, and untrained professionals making the diagnoses. While they are not of course the same, listen to some of their arguments and read their comments (link below) to see if you agree with my assessment.

https://onlinelibrary.wiley.com/doi/epdf/10.1002/jclp.23348

Can we solve the pandemic problems around diagnosis and intervention?

This week’s #ASFpodcast highlights a few articles from the Journal of Autism and Developmental Disorders this week which examined the tolerability and efficacy of online diagnostic procedures and interventions, from the perspective of both parents and clinicians. They seem to work about the same, although there were some caveats. For many reasons, online and telehealth options are here to stay, and more needs to be done to improve their accuracy, acceptability, feasibility and effectiveness. These early studies are promising though, and lead the way to even more improvements to help make them a viable option for families in the future.

https://link.springer.com/article/10.1007/s10803-022-05435-z

https://link.springer.com/article/10.1007/s10803-022-05576-1

https://link.springer.com/article/10.1007/s10803-022-05554-7

https://link.springer.com/article/10.1007/s10803-022-05580-5https://link.springer.com/article/10.1007/s10803-022-05607-x

Is autism a yes/no diagnosis?

This week’s podcast highlights a paper from the IBIS (infant brain imaging study) that tracks infants from 6 months to 5 years of age to examine how ASD symptoms cluster together. These infants either have a diagnosis or they don’t, or they have something which doesn’t meet diagnostic threshold but is still impairing in some way. Ignoring the actual diagnosis, if the data is clustered together around how symptoms present, what happens? What does that mean for some of the longest standing research findings in ASD? For example, using this new approach which ignores and actual diagnosis, are more males are diagnosed than females? As it turns out, it equals out these ratios. What does this mean? Listen to this week’s podcast to hear directly from the first author, Catherine Burrows!

https://www.sciencedirect.com/science/article/abs/pii/S0006322322013130?casa_token=ZFZpvnUOIBkAAAAA:G667QIkX_Vd6JPeWvIPABo1FPrdNL_3IiW-ajy7xR2Nme_I4ztOEf2xJ4FyhGHTMgrb8Lqq6Og

How is ASD diagnosis happening right now?

Early on in the pandemic, clinicians struggled with how to turn in-person evaluations into Telehealth evaluations. One year later: what have they done? How have they modified? How do parents feel about these changes? Should they stay or should they go? This topic will be featured on our ASF Day of Learning on April 22nd as well. Also COVID related, new data on the effects of maternal immune infection on autism outcomes in children – with a bright light at the end of the story. At least a bright light at some maternal infections. Listen to the opening song and keep on “staying away”.

https://pubmed.ncbi.nlm.nih.gov/33730320/

https://pubmed.ncbi.nlm.nih.gov/33720503/

https://www.nature.com/articles/s41593-020-00762-9