Podcast: If you want to know about people with autism, ask them

If you want to know about people with autism, ask them. Scientists are working on how they collect information from people with autism in order to better understand individual experiences and produce findings that may help improve services. Listen to the podcast episode here.

ASF is proud to announce continued support for the Baby Siblings Research Consortium (BSRC), a network of over 33 research sites around the world studying the younger siblings of people with autism. The Baby Sibs database now tracks over 5,000 younger siblings, with and without autism. The database has been used to develop more sophisticated screening and diagnostic approaches, to understand early biological features of ASD even before symptoms develop, and to inform clinicians of early treatment targets. The additional funding will allow researchers to continue submitting information to expand data points so that a deeper understanding of development across the lifespan can be made. ASF support will also allow scientists to collaborate on key issues like early biological testing and searching for biomarkers of ASD.

For this week’s podcast, Soheil Mahdi of the Karolinska Institutet describes the International Classification of Functioning (ICF), a tool used being used to describe the strengths of people with autism in order to identify opportunities for them. ASF is collaborating with Mr. Mahdi on an employment policy brief.

On this week’s podcast, data obtained from brains of people with autism is reused and re-analyzed so that a new role of mitochondria and their relationship to the activity of synapse genes could be discovered. In addition, cellular stress is seen in the brains of people with autism. What comes first? Mitochondrial dysfunction and cellular stress or changes in brain development? These findings were thanks to resources provided by the Autism BrainNet. You can learn more about brain tissue donation by signing up at takesbrains.org.

On this week’s podcast, a special episode highlighting recent research focusing on fathers. This includes genetics, parental stress and quality of life, and broader autism phenotype features. Of note, two new studies that look at antidepressant exposure in father and probability of having a child with autism – a variation on studying maternal exposures.

On this week’s podcast, a new study shows that baby teeth can show biomarkers of prenatal exposures in kids with autism. Also, new data linking autism to allergies, including food allergies.

The Interactive Autism Network published an article explaining the latest epigenetics research in autism. It highlights how environmental factors, both internal and external, affect genes and influence an individual’s development. Including findings made from Autism BrainNet tissue resources, research is demonstrating how epigenetics may play a role in the development and severity of autism. Read the full article here.

Suicidal thoughts and suicidal attempts have been shown to be increased in people with ASD. Rates are similar to those with bipolar depression and schizophrenia, but are higher even without psychosis. This is shocking and an urgent health issue in the autism community. This week’s podcast summarizes recent data, publications, presentations, and concerns of thought leaders in autism about rates of suicide, what the risk factors are, and where research should be directed to prevent suicide.

If you or anyone you know is thinking about ending their life, please reach out to the National Suicide Prevention Hotline: +1 (800) 273-8255.

On this week’s podcast, diagnosis with the DSM 5. While much work needs to be done to include individual abilities and disabilities into the DSM5, after the CDC prevalence numbers were published last month, it became clear the old DSM IV was not working. In a replication of a previous finding, it showed that the DSM IV categories of Aspergers, PDDNOS and autistic disorder were just not being used consistently across states, and left the interpretation of those diagnoses somewhat meaningless. While DSM 5 is a step in the right direction, more work needs to be done to ensure everyone is receiving the most specific diagnosis possible, and getting the services they need. Listen to the podcast here.

On this week’s podcast, Dr. Tracy Yuen of University of Toronto and the Hospital for Sick Children explains two different analyses of cost-effectiveness which looked at 1) universal screening for ASD and 2) use of genomic sequencing to identify novel variants in people with ASD.

This week’s podcast is a short summary of just a few of the presentations. There was more of an emphasis on what has been called “real life” research questions like employment, quality of life, and relationships. As a result, some of the more basic science questions around autism are now being presented at other meetings. This is a shame. This podcast follows some of those basic science questions to the now translational opportunities that were presented at the meeting. It also highlights some newer findings that will provide help to people at all ages who need supports and services.

On this week’s podcast, three genetics papers featuring three ASF fellows! All three deal with using whole genome sequencing (WGS) to study non-coding regulatory regions that may be associated with autism. These regions of DNA do not code for proteins but regulate the regions that do. Mutations in the non-coding regulatory regions that regulate the genes associated with autism appear to be passed down from the father. However, the statistics around these findings need to be carefully considered because, for autism risk, the contribution of non-coding mutations seems to be more modest than that of coding mutations.

Read the work by…
Dr. William Brandler of UC San Diego, ASF Fellow ’15 here.
Dr. Joon Yong An of UCSF, ASF Fellow ’18 here.
Dr. Donna Werling of UCSF, ASF Fellow ’16 here.