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Just listen to Nancy Reagan: say NO to MDMA

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This week’s podcast begins with a comment on the debate over ABA, helpful or harmful?  But the big news this week is an analysis of very early, but very published data, on the use of MDMA, or “ecstasy” or “Molly” in people with autism.  Called an “empathogen”, MDMA can elicit feelings of warmth, love and need to cuddle.  However, it has a dark side. MDMA is a neurotoxin.  It kills serotonergic brain cells.  There is no known safe dose.  Researchers studied and found weak evidence that it reduces social anxiety in people with autism.  Social anxiety isn’t a core symptom of autism and thank you to Larry Scahill at Emory University to provided an expert description of each.  While we will not comment on every negative study out there, this one is worth noting.  When someone offers you MDMA, JUST SAY NO.

https://www.ncbi.nlm.nih.gov/pubmed/30196397

 

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Can IGF-1 treat autism symptoms? A clinical trial aims to find out

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A full transcript of this podcast episode can be read on the ASF blog here.

Researchers at Mount Sinai led by Alex Kolevzon are running a clinical trial of the compound insulin-like growth factor 1 (IGF-1) for children with idiopathic autism. Dr. Kolevzon’s team previously demonstrated the safety and feasibility of IGF-1 in treating Phelan-McDermid syndrome, a single-gene form of autism. Particularly, the IGF-1 treatment improved symptoms of social impairment and repetitive behaviors, which are core symptoms of autism. Expanding their investigation into idiopathic autism, the researchers are working hard to make sure families can comfortably and knowledgeably participate in the clinical trial. Mahir Rahman spoke with Dr. Kolevzon about the study and where it hopes to go. Interested in joining the study? Go here to learn more.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4326443/

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4450831/

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Children are not small adults

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Cathy Lord and her colleagues have been studying a group of people with autism from age 2, all the way through adulthood, at age 19.  Her colleague and first author Vanessa Hus-Bal who is leading the efforts to study adults at a new institute at Rutgers University, talks about the findings and what they mean for people with autism as they get older, and points out the implications on intervention.  Also, the stress response is different in autistic people, but is it different in adolescents and adults, and does it change as people get older?  A social stressor is used to identify how they are different and what it means for treatment.

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Tristram Smith, 1961-2018

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Two weeks ago, the autism research community lost a pioneer, mentor and advocate for the autism community.  This podcast only highlights a portion of the enormous contribution he made to autism research and the impact his research had on families with ASD.  Also, two people that know him best, one of his current mentees, Suzannah Iadarola and his wife, Jennifer Katz, reflect on his dedication and commitment to families of all ages.  He will be missed.

 

Some of his more recent papers are here, although just a recent sampling of everything he contributed:

https://www.ncbi.nlm.nih.gov/pubmed/30101320

https://www.ncbi.nlm.nih.gov/pubmed/30009626

https://www.ncbi.nlm.nih.gov/pubmed/29458258

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What are PCOS and DDT, and what do they have to do with autism?

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Two new studies came out this week that implicates the role of the endocrine system in autism.  The endocrine system which regulates hormones in your body, also has a key role in brain development early on in fetal and child development.   PCOS is a metabolic condition and DDT is a toxic chemical banned years ago, but both are linked to the endocrine system, both are bad for many reasons, and both are linked to autism.  These studies provide evidence that we should #savetheEPA and be aware of medical and environmental factors which do not cause, but contribute to autism.  Also, PCOS is linked to autism in adult women, so ladies – if you show signs of PCOS, please talk to a doctor!

PCOS study:  https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6068102/  

DDT study:  https://ajp.psychiatryonline.org/doi/pdf/10.1176/appi.ajp.2018.17101129

PCOS blog:  https://www.rmanj.com/lifting-the-fog-on-polycystic-ovary-syndrome-pcos/

http://www.panna.org/resources/ddt-story

 

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What is happening in research around employment for people with ASD?

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This week, Melissa Scott from Curtin University, a partner in the international policy brief on employment for people with autism, discusses the first paper out of this collaboration:  a scoping review of the existing research out there on employment practices.  Surprisingly, there was one crucial element missing as a focus in all the intervention studies  –  the environment.  Dr. Scott discusses what else was learned from this scoping review, and how the findings can help people with autism not just obtain, but maintain employment, through constructive policy.   ASF is a proud partner on this policy brief, and Curtin University has been an amazing collaborator.

https://www.ncbi.nlm.nih.gov/pubmed/30073870

 

 

 

 

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PMS: it’s not what you think

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Last weekend, the Phelan McDermid Research Foundation held their biannual family conference in Dallas Texas.  People with Phelan McDermid Syndrome, or PMS, suffer from seizures and intellectual disability, and about 70% have an ASD diagnosis, Over 150 families from across the world came together to show each other support, learn about housing options, receive genetic counseling, talk to experts and hear the latest research.  ASF attended the meeting and this podcast is a short summary of what was presented by researchers at the conference.  This syndrome is caused by mutations of the SHANK3 gene, which is present in about 1% of people with autism, making it the most common single genetic influence of ASD.  Even if you don’t have a mutation in SHANK3, many of the issues affecting those with PMS may apply to you.  To learn more about the conference, click here:  https://www.pmsf.org/ifc/

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Classroom interventions that work

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Two studies came out recently which used a randomized design to show how interventions can be delivered in the classroom.  They both focused on making sure they were implemented properly and that teachers received the support they needed to help kids in the classroom.  It isn’t just about writing a manual, it’s about making sure teachers know how to deliver it.

https://www.ncbi.nlm.nih.gov/pubmed/29998740

https://www.ncbi.nlm.nih.gov/pubmed/29939056

 

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Autism diagnosed in school age, and does early intervention make a difference?

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Thanks to a Facebook follower, this week’s podcast highlights a new systematic review on Early Intense Behavioral Intervention. This systematic review, however, is not different from one published 5 years ago, because the nature of early interventions have changed so much that they no longer fit into the same criteria. While the rankings are disappointing, the findings do not reflect the ways in which newer interventions are being selected, delivered and studied. Also, we always hear about early diagnosis helping with early intervention. But what about kids who are not diagnosed until they reach school age? They have a different profile of ASD and may be a different subgroup of autism altogether.

https://www.ncbi.nlm.nih.gov/pubmed/29742275

https://www.ncbi.nlm.nih.gov/pubmed/29852752

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

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There are relatively few studies using self-report findings on standardized measures from people with autism.  Part of the reason for this is because there aren’t that many of these instruments to begin with.   Scientists are working on that.  But this week, a group from the UK took the existing data from smaller studies using the the Ritvo Autism Asperger Diagnostic Scale (which can be found here:  https://www.aspietests.org/raads/) to look at sex differences.  They found subtle differences between males and females on their language and sensorimotor features.  This indicates males and females experience autism slightly differently.   In addition, a different study interviewed people with autism at different ages to ask how symptoms changed over time and found that features of autism peaked in middle adulthood.  However, close family members, friends or caregivers didn’t always see it that way themselves.  This reiterates the need to collect information from multiple people – including people with autism – to provide better services and supports.

https://www.ncbi.nlm.nih.gov/pubmed/29796237

https://www.ncbi.nlm.nih.gov/pubmed/29971654