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The Autism Bereavement Project

Many individuals with autism are excluded from the normal bereavement process, even upon the death of a parent or sibling. This exclusion may be highly damaging and may leave the excluded individual vulnerable to confusion, protracted anxiety, emotional distress, and escalation of any pre-existing challenging behaviors—behaviors which can even lead to loss of a job or housing. This kind of exclusion from the common rituals of grief and mourning is known as disenfranchised grief (Doka, 1989).

It is hypothesized that in the case of autistic individuals this social exclusion is based on both lack of information and discomfort among those who would typically support a bereaved individual: family and friends, and clergy and grief professionals. We believe that autistic individuals are likely excluded from the rituals of mourning– sometimes not even being notified that a loved one has died—due to a well-intentioned effort to protect that individual. In truth, thoughtful acknowledgement of grief and opportunities to be included in the rituals of mourning are the most compassionate and effective ways to support anyone, with or without autism.

In response the NLM Foundation has commissioned the Autism Bereavement Project. Through a competitive RFP process the Foundation selected the Hospice Foundation of America to create a free, accessible, stand-alone website for family, friends, clergy, and other grief professionals to empower them to support more effectively adults with autism in bereavement.  This website will present information about why it is important to support a grieving autistic and clear, gentle guidance on how to do so; it will also include a variety of materials on death, grief, and mourning for autistic adults themselves. The website will include both general guidelines and concrete, practical suggestions regarding grief and loss. Content throughout the website will promote support for people with all subtypes of autism, taking care to include the 40% who are nonverbal or minimally verbal. Special conditions will be addressed, such as grief and virtual funerals in the age of COVID-19. The website will offer clergy and other grief professionals an optional webinar for which they can receive Continuing Education Units (CEUs).

The overall goal of this project is to foster a healthier experience of grief and loss for autistic adults by helping family, friends, clergy, and other grief professionals better support them in their grief.

Reference

Doka, Kenneth. Disenfranchised Grief 1989, Lexington, MA: Lexington Press.