Scientists: they are just like us. They are in a pandemic crisis too

Scientists who help families affected by ASD may look like they have it all together, but the pandemic has been catastrophic not just on discoveries to help families, but to the people who conduct research, meet with families, and provide services. They have lives too, and those lives have interrupted their abilities to provide care and work towards easing suffering. This week’s podcast is a conversation between 3 early career investigators who helped conduct a survey of the common struggles, obstacles, and possible solutions to this problem.

https://autismsciencefoundation.org/wp-content/uploads/2021/03/ASF-ECR-Commentary-20211.pdf

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

COVID-19 is especially deadly to the IDD community

In a study over over 64 MILLION people across the US, COVID-19 has been shown to be most deadly to those with an intellectual disability. This was once a theory, now it is a proven fact. Take action! Write your governor and demand that intellectual disability and neurodevelopment disorders be put on the priority list for vaccination in your state. A sample letter is below:

As a person or family member affected by intellectual disabilities and neurodevelopmental disorders, we ask that you include all high-risk patients and caregivers living with these conditions as a priority population in your immediate prioritization of FDA- approved COVID-19 vaccines. 

Intellectual disabilities have extensive, and often severe comorbidities. Early prevention and intervention are paramount, and this vaccine is critical for our high-risk community and public health. Families affected by IDD and NDD live daily with conditions including: cardiopulmonary dysfunction; neurological deficits; debilitating seizures; vision and/or hearing loss; gastrointestinal issues; autism spectrum disorder.  A recent publication in the New England Journal of Medicine demonstrated the high mortality of COVID 19 in people with IDD and since groups with lower risk of mortality have been listed as high priority conditions, we request that those with IDD be added immediately.  As leaders and caregivers in this community, we strongly believe individuals living with IDD who require daily hands-on care, and their caregivers should be included in the high-risk population for risk for catastrophic outcomes due to infection of COVID-19. The effects of COVID-19 could be devastating for individuals and family members, of all ages, who are constantly at high-risk for neurological and organ damage caused by potential infection. During the pandemic, these families have lost vital resources (such as physical, occupational and speech therapies) and myriad interventions otherwise afforded to them. Compounded by COVID-related delays in routine public and private care management due to risk of exposure, many people have experienced regression, and the only way to safely resume these crucial interventions is through immediate vaccination.  Beyond the direct risk of Covid-19, the pandemic has had negative effects on the ability of individuals with IDD to receive health care and daily support that they need.

We urgently call on you to prioritize all people and family members and caregivers of people with IDD and NDD to receive the COVID 19 vaccine.

https://pubmed.ncbi.nlm.nih.gov/33676088/

NEJM article open access: https://catalyst.nejm.org/doi/full/10.1056/CAT.21.0051

Happy New Year – reasons to be excited for 2021

Welcome to 2021! Over the holiday break, autism researchers were busy coming up with answers to important questions: 1) how does an environmental exposure relevant to ASD change gene expression and 2) does Telehealth work and for whom? The first question was addressed by an ASF undergraduate who published in Nature. He is going to go on to do great things.

WEAR A MASK

It’s been about 6 months since the COVID-19 pandemic began in the United States, longer in Asia and some parts of Europe. While scientists still don’t know the direct effects of COVID-19 in pregnant women on later development of their children, they do know about ASD following other neuroinflammatory responses. These include things like the flu, UTI’s, herpes, and other things that cause inflammation and immune disruption. This podcast reviews the evidence so far in humans and animals, with the goal of helping people understand that the threat is real, and that wearing a mask is not a mark that you do not have the freedom to do so. It is a reflection that you understand that the world is victim of a pandemic, and you want to protect others from getting sick.

https://reader.elsevier.com/reader/sd/pii/S0149763419302088?token=6A507B42E4214202ED738386D6C119F334516249286DFE65CDE1B73A0859F430F8C0600C592A04FF500B31454175C08A

https://www.ncbi.nlm.nih.gov/pubmed/31824351

Autism research around the world during this pandemic

It’s been over 6 months since this pandemic started. This isn’t just a U.S. problem, this is a worldwide shutdown of all biomedical research designed to help families with everything from autism to diabetes to cancer to multiple sclerosis. So how are autism researchers adapting? What are their concerns for the future that they want families to know about? A recent issue of Autism Research asked scientists from around the globe what their most pressing problems were and how they were addressing them to help families. This week’s podcast summarizes them and focuses on similarities across different geographical regions.

You can read all the articles FREE here: https://doi.org/10.1002/aur.2329