By Alison Singer
President, Autism Science Foundation
We at the Autism Science Foundation realize this is an incredibly challenging time for the thousands upon thousands of people who are stakeholders in our work to support autism research. In recent weeks, we have taken several steps to provide these individuals and families with direct support. All families are struggling to adapt to the “new normal” of distance learning, but families raising children with autism are dealing with unique challenges. Children with autism who need stability and insist on “sameness” are finding their routines completely upended. Special education students, many of whom have severe behavioral issues and are used to working one-on-one with a highly trained teacher, are now at home with their parents. Physical therapy, occupational therapy and social skills training protocols are hard to replicate on Zoom.
We have compiled an extensive list of resources that address the wide variety of issues these families are facing. These include tips for meeting these children’s unique educational needs, strategies for behavior management and valuable information on navigating the healthcare system. There are also resources on managing mental health, for both individuals with autism and their family members. We are constantly updating this list with the hope of assisting as many families in crisis as possible.
All families are struggling to adapt to the “new normal” of distance learning, but families raising children with autism are dealing with unique challenges. Children with autism who need stability and insist on “sameness” are finding their routines completely upended.
While this support to families is crucial, we haven’t forgotten about the autism research community. With laboratories and universities shut down, the research world has changed overnight, and many talented scientists are in limbo as they try to make sense of how to continue their important work with limited facilities and without access to people with autism to participate in clinical trials.
Announced last week, our new Pivot Grants initiative is meant to help cover new costs encountered due to modifications of an original research plan as a result of the current shutdown across research institutions. These changes range from anything from fully readjusting the research plan to paying for storage of previously acquired biological agents and implementing technological tools to collect data from families remotely. Scientists have been forced to adapt on the fly, and we want our funding mechanisms to match this nimbleness.
These are just a few of the ways ASF is providing resources to the autism and science communities alike. We remain dedicated to our mission and are actively looking for ways to continue expanding our efforts during this crisis, so keep an eye out for more updates in the weeks ahead.
These are challenging times for us all. While our ability to hold events and travel the country as autism advocates is curtailed for the time being, members of the community need our support more than ever, and we will continue to provide it as best we can. Be well and we hope to see you soon enough.