“During two years of content development, we interviewed and sought input from more than 100 adults with autism, their families, autism experts, and grief authorities who shared their experiences and expertise,” said Amy Tucci, president and CEO of HFA. “The result is a website that will dispel any preconceived notion that adults with autism do not grieve. Autistic adults grieve loss deeply, but their reactions may appear different from those of the neurotypical population. Consequently, they are more likely to be misunderstood and inadequately supported in grief.”
One in 45 U.S. adults is on the autism spectrum, according to the Centers for Disease Control and Prevention. Autism spectrum disorder is a developmental disability that is highly individualized and presents a wide spectrum of challenges and strengths. Some autistic people need assistance with daily living activities while others function independently. AutismandGrief.org was developed with this wide spectrum in mind.
"The NLM Family Foundation is aware that the experience of being marginalized or ignored during times of grief is far too common in the autism community," said Beth Zwick, program officer at the Foundation. "We are delighted to have partnered with Hospice Foundation of America, the premier grief expert, to create this informative and accessible website. It is our hope that autistic adults, their loved ones, and the professionals who serve them will find what they need here to enable a more sensitive and supportive grief experience."
AutismandGrief.org provides a virtual tool kit for visitors through three portals: one for adults with autism; a second for families, friends, and direct support professionals of adults with autism; and a third for clergy, counselors, and health and human service professionals who support or interact with autistic adults. Website content is also available in Spanish.
The website features:
- information about how grief may be experienced by an adult with autism;
- suggestions regarding what may be helpful coping strategies;
- videos about grief, including interviews with autistic adults and their families;
- ways to provide for choice and inclusion in death rituals, such as memorial services and funerals;
- advice for communicating the news of death;
- social stories about grief for adults;
- two complimentary continuing education programs for a wide range of professionals.
Please note: The use of identity-first language ("an autistic adult" or "an autistic") and person-first language ("an adult with autism") is a personal choice. The creators of autismandgrief.org consulted with autistic researchers and advocates to understand the range of views regarding language use and to respect all views by alternating a variety of styles throughout autismandgrief.org.
