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

More on why intellectual disability matters.

There have been more than a few podcasts lately about why intellectual abilities (or disability) are important in understanding ASD. It will probably be a theme in the end of year summary. This week, intellectual ability affects risk of dying from COVID and how anxiety is measured. Some studies show that increasing cognitive ability increases chances of having anxiety, although, because it is not always measured appropriately in those with intellectual disability, this linear relationship may not hold. However, while it is important in anxiety and COVID, it may have less to do with how pain is expressed. Podcast links below:

If you want to register for the December 9thwebinar about the COVID Vaccine:  

https://www.chop.edu/centers-programs/vaccine-update/vaccine-webinar-series

https://pubmed.ncbi.nlm.nih.gov/33198481/

https://pubmed.ncbi.nlm.nih.gov/33175317/

How you doin’?

We are now about 8 months into the pandemic and the effects of social distancing. How are families doing? What are scientists doing to understand the effects and ways to help families in the future? This podcast describes four international studies that addressed what families were experiencing and how they were coping. A list of references is below:

https://www.mdpi.com/2077-0383/9/9/2937/htm

https://pubmed.ncbi.nlm.nih.gov/32899799/

https://pubmed.ncbi.nlm.nih.gov/32503172/

https://pubmed.ncbi.nlm.nih.gov/32808424/

https://pubmed.ncbi.nlm.nih.gov/32939917/

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

Pandemic Problems? ASD Researchers are Listening

You have spoken, and scientists have listened, to surveys that have asked how you are doing, what your family needs, what is working and what has not worked. Telehealth gets mixed reviews, and kids are suffering from everything from anxiety to OCD. Other results of these surveys are covered in this week’s ASF podcast. Please continue to answer these requests for feedback, because the future of autism interventions, assessments and services depends on them.

https://pubmed.ncbi.nlm.nih.gov/32515992/

https://pubmed.ncbi.nlm.nih.gov/32503172/

https://pubmed.ncbi.nlm.nih.gov/32445682/

How to be resilient

Resilience is the quality that allows people to recover from severe trauma or other adverse events with their mental health somewhat intact. For many families, this international public health emergency is a traumatic event and coming out of this is going to require a lot of skills and training. Most of us have never experienced anything like this before and families with autism have additional burdens to deal with. We will be hosting a webinar about it on April 22nd with experts in the field, but in the meantime, this is a list of tips from licensed psychologists in the field.

Telehealth: does it work?

This week’s podcast is focused on a topic many of you may be learning about now: Telehealth. This is remote delivery of care through the telephone or a video chat. If your healthcare appointment has not been cancelled, it’s been moved to Telehealth. If you need to talk to a doctor, it will probably be done through Telehealth. So what is it? Is it helpful? Is there enough right now to say? This podcast covers all of these things for families to get a better handle of what they are getting themselves into.

https://www.ncbi.nlm.nih.gov/pubmed/31969108
https://www.ncbi.nlm.nih.gov/pubmed/30155578

Getting through the COVID-19 scare

These are extraordinary times. We all need to lean into each other and help each other out during this emergency. Today’s podcast is a list of good advice and ideas that we have pulled from various sources, as well as scientifically valid ways of alleviating extra anxiety because of the current situation. It isn’t meant to solve all your problems, but maybe it can solve part of one. The National Council on Severe Autism will also be hosting a “share and care” that hopefully will allow everyone to share what they are doing that works, and ask from others how they are handling the situation. You can register here: https://attendee.gotowebinar.com/register/5189740368572667405