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

Investigating inequality in autism spectrum disorder

While autism organizations might not always agree on everything, there is something that we all feel is unacceptable and is priority for research:  racial, ethnic, and poverty – induced inequities in access to services for ASD.  This podcast covers what scientists know about these disparities, and highlights new research that is doing something about them.  There is much more that needs to be done in this area, and while some of this is not new news, its information we all need to hear.

 

https://www.ncbi.nlm.nih.gov/pubmed/31132161

https://www.ncbi.nlm.nih.gov/pubmed/31342443

Lessons from the Autism Society meeting

Last week, the Autism Society (www.autism-society.org) held it’s 48th annual meeting in it’s 50th year of existence.  In addition to hearing an update on how people with autism and their families have benefited from autism research over the past decade, participants contributed to panels on experiences of adults, behavioral techniques, technology, the the history of autism.  On this week’s podcast, hear about two of the sessions – how to teach social interaction on the iPad and how to be an effective advocate.

The triple crown of autism research gatherings

Three important meetings of researchers took place this week.  First, the Interagency Autism Coordinating Committee, or IACC, met for the first time in over a year to discuss the coordination of private and federal efforts in autism research and advocacy.  Also, the Autism Sisters Project science committee met to figure out how they are going to find the female protective factor in autism, and what else the study can do when, and if, it is found.  Finally, a group of researchers who study autism in high risk families, before a formal diagnosis can be made, met to understand how the brains of people with autism are connected.  They also are working on new instruments to better diagnose both males and females with ASD.  Finally, in a press release from Tuesday, the NIH announced a partnership that will substantially improve autism research.  november17