The meaningful impact of clinical trials

Clinical trials in autism are so incredibly important to families and adults, but sometimes hard to understand. Why? How can it help me or my family? What do I need to do? What do all of these terms mean? For researchers: it’s hard to get families to participate in my study. What can I do to improve the appeal? Caroline Averius and Zachary Williams explain in this podcast about a newly launched two new guidebooks designed to help explain clinical trials, why they are important and what needs to be shared with the community to ensure transparency.

Want to read them? Links below:

https://tinyurl.com/AutismTrialsGuidebook

https://tinyurl.com/AutismTrialsExplainer

The newest on using genes to predict later diagnosis and those immune blebs in the brain

Hot off the press:  new data from a collaboration between the BSRC and geneticists in Canada demonstrate the utility of genetics to predict either ASD or atypical development in infant siblings of children already with a diagnosis.  Researchers have been trying to develop more precise biological mechanisms to make predictions in these infants, because they have a 15x greater chance of having a diagnosis, they can’t afford a “wait and see” approach.  Also, while genetics had originally been thought to be irrelevant to some brain pathology in ASD, it’s now been shown possible that it contributes to the immune hyper activation in the brain.  This week, Dr. Matt Anderson from the Autism BrainNet describes “blebs” in the cells of the brain caused by t-lymphocytes.  What causes them?  Genes?  something else?  Thank you to Dr. Anderson for joining in this podcast to explain.

https://www.ncbi.nlm.nih.gov/pubmed/31801954

https://www.ncbi.nlm.nih.gov/pubmed/31591744

 

The latest on marijuana and autism across the globe

Since the ASF policy statement on marijuana for the treatment of ASD was published this summer, there have been some new scientific studies that may be of interest to families.  As it turns out CBD has opposite effects in the brains of people with autism compared to those without autism, meaning that it is absolutely essential that more research is done specifically in people across the spectrum in ASD.  Also, early studies in Israel and Brazil are showing some positive effects on behavior, but they are open label non controlled compassionate use basis studies, which in encouraging, but the science needs to be more rigorous and more studies need to be done in people with autism using standardized autism assessments if any progress is to be made.  Luckily a new study at NYU is enrolling for just that approach.  Please contact Latoya.King@nyulangone.edu if you want to learn more about that.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6732821/

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6784992/

https://www.ncbi.nlm.nih.gov/pubmed/31736860

https://www.ncbi.nlm.nih.gov/pubmed/30382443

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6336869/

 

 

Where superior ability crosses disability in ASD

A study conducted by researchers at Yale this week revealed that while people with autism have disabilities in reading individual emotions, they have an unexpected amazing ability to understand and apply social rules to groups of people.  They understand social phenomena much better than those without. So how can this be?  Also, a new groundbreaking study shows scientists that there are changes in brain activity that are observed way before a diagnosis, which can change early detection and early intervention of ASD.

http://www.pnas.org/cgi/pmidlookup?view=long&pmid=31501348

https://www.ncbi.nlm.nih.gov/pubmed/31519897

Autism: Difference or Dysfunction?

The question of whether or not autism is a difference or a true dysfunction in brain development has been debated for years.  A new study from Canada demonstrates that within an autism diagnosis, there is less of a difference in symptoms in the last 5 years than there was 30 years ago.  This raises a lot of questions about what autism researchers have been studying lately.  It also reinvigorates the discussion of whether the heterogeneity issue in autism has become such an issue that those with a true dysfunction are not getting the services they need, because of an interpretation that autism is just a difference.  The podcast includes thoughts of the community voiced on social media as well as opinions of the ASF scientific advisory board.

Article is open access here:  https://jamanetwork.com/journals/jamapsychiatry/fullarticle/2747847 

 

The extra benefit of caregiver mediated interventions

This week, a new systematic review published by researchers at Virginia Polytechnic Institute looked at the existing evidence around caregiver (parent) mediated interventions and not child outcome, but family relationships and dynamics. While it isn’t the focus on the intervention, what effect does allowing parents to be involved and empowered on their child’s support on the wider family?  The answer is, it does help, although not all interventions are the same.  Also, a new video tool from collaborators at Washington University and the UC Davis MIND Institute to help parents identify early signs and symptoms in their own children was validated, which is exciting but more work needs to be done.

Yeah, another study about autistic poop

This week’s podcast includes a summary of the new study, this time in an animal model, looking at microbiome transplantation.  Because this was more of an experimental model, the researchers could be more rigorous in their design and look at things like behavior, brain activity, and specific biological pathways.  While a mouse does not have autism, transplantation of the autism microbiome resulted in autistic-like behaviors.   Second, a hopeful message of the value of participating in research on outcomes – those infants that were tracked prospectively showed improved outcomes later on, suggesting that all of the extra attention they get leads to a reduction in symptoms and an improvement in adaptive behavior.  Even if you do not have a family history of autism – participate in research.  It’s good for your child, and it’s good for other people’s children.

 

https://www.cell.com/cell/fulltext/S0092-8674(19)30502-1 

https://www.ncbi.nlm.nih.gov/pubmed/31032937

 

 

 

 

A tool to describe strengths of people with autism

Due to popular demand, this podcast is dedicated to the International Classification of Functioning, or ICF.  This is a tool used to measure functioning in people with not just autism, but across individuals.  As the expert guest, Soheil Mahdi, describes in this podcast, it isn’t about replacing a diagnosis of autism, but complementing the diagnosis with a description of ways the person is functioning in society, what strengths they have and how it that may identify opportunities for autistic individuals.  Soheil is a fellow at the Karolinska Institute and ASF is collaborating with him on the employment policy brief.  Thank you for suggesting this topic for a podcast!

 

Here are some other resources of interest:  https://ki.se/en/kind/startpage

SLEEP: it’s what’s important for autism

Sleep disturbances affect up to 80% of people with autism, and as it turns out, these sleep problems translate to daytime problems like probability of hospitalization, severity of symptoms and even employment.  This week’s podcast focuses on three new studies that examine the relationship between sleep problems and function in people with autism across the spectrum, and provides new insights on how to study sleep.  Dr. Ashura Buckley from the NIH will be speaking about sleep in autism at the Day of Learning on April 11th – if you have’t registered yet, there is still time:  https://www.eventbrite.com/e/2018-autism-science-foundation-ted-style-autism-science-conference-registration-39878706284

Articles used in this podcast:

https://www.ncbi.nlm.nih.gov/pubmed/29500758

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5660229/

https://www.ncbi.nlm.nih.gov/pubmed/29455555