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

Psychedelics and Symptoms

More and more, psychiatrists are looking to psychedelic medication to help individuals who are resistant to other types of therapies. These include seizures, PTSD and depression. But can they help individuals with autism or ease autism-related problems or improve cognition? Two new studies on cannabis and one on ketamine are summarized in this week’s ASFpodcast. Promising, interesting, but not definitive. It’s a short podcast this week.

https://pubmed.ncbi.nlm.nih.gov/36085294/

https://pubmed.ncbi.nlm.nih.gov/35617670/

https://www.sciencedirect.com/science/article/pii/S2666247722000549?via%3Dihub

New ways to solve old problems

This week’s podcast focuses on innovative methodologies to understand how to reach black families, understand why and when autistic people prefer not to look at faces and how interventions can improve conversation and social communication. They use culturally and racially matched mentors, old home video tapes (keep taking those!) and machine learning to look not just at novel methods but novel ways of studying a particular outcome.

https://pubmed.ncbi.nlm.nih.gov/35232271/

https://pubmed.ncbi.nlm.nih.gov/35228613/

https://pubmed.ncbi.nlm.nih.gov/35229983/

Families work hard for treatments

Unfortunately, families hear more about what does work to help families with ASD rather than what does not work. But through the course of decades of research, scientific projects and hours of families participation, there is a better picture of what treatments are, and are not, helpful. This week’s podcast will review what drugs have shown to not be effective so far in treating restrictive and repetitive behaviors and also provides an update on umbilical cord blood stem cell transfusions on social communication behaviors.

https://www.jpeds.com/article/S0022-3476(20)30334-6/pdf

https://jaacap.org/article/S0890-8567(20)30265-3/pdf

More ASD links with hormones that are not well-known but are now shown

Oxytocin treatment for social communication in ASD has been recntlyused by doctors, but mostly used by people using it on their own through a nasal spray. Unfortunately, it doesn’t have a huge, if any, effect in randomized clinical trials. This week’s podcast investigates current research in both the oxytocin and vasopressin system in ASD, when changes start, and how oxytocin administration has different effects in autistic women vs. neurotypical women. Once again, clinicians can not assume that what works in people without ASD will work in those with a diagnosis.

https://www.ncbi.nlm.nih.gov/pubmed/32341146

https://www.ncbi.nlm.nih.gov/pubmed/32188502

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/

 

 

The Pros of Prozac and the Placebo Effect

Two of the largest randomized control trials of Prozac as an intervention for restrictive and repetitive behaviors were published recently.  They both coincidentally found no effect on the core features of autism, nor clinician rated improvement.  What they did find is a big placebo effect.  That is the behaviors of the participants changed even if they thought they might be getting the medication, but were actually getting an empty pill.  This is a big problem in research in studying medications across mental health.  So why is Prozac so popular?  And when it comes to some features of autism, is the placebo effect so bad?

https://www.ncbi.nlm.nih.gov/pubmed/31638682 

https://www.ncbi.nlm.nih.gov/pubmed/31267292

News new families can use, thank you to the BSRC

This week an important study was released that provides information that parents can use – particularly parents with a child with autism and another on the way or who is an infant.  This of course comes from the Baby Siblings Research Consortium and makes particular observations about families with 2 or more affected children vs 1 affected child.  They have different rates of autism outcomes and trajectories of behaviors that parents and doctors should be aware of.  In addition a new meta analysis of vitamin supplementation shows that while moderate doses of vitamins may not be harmful, they may not also be helpful.  In other words, talk to your doctor about a nutritional plan and assessment, and save your money for things that are known to work.

https://www.ncbi.nlm.nih.gov/pubmed/31589284

https://www.ncbi.nlm.nih.gov/pubmed/31586029

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.