About Us
About the Autism & Grief Project
The Autism & Grief Project is an innovative online platform dedicated to helping adults with autism navigate and cope with the complexities of grief arising from death and loss. This engaging toolkit supports and explores the grief experience with personal and social stories, animated videos, and many other resources. Unique materials are designed for autistic adults and the families, friends, professionals, and faith leaders who support them. Topics include processing the loss of a family member or loved one, death of an animal companion, non-death losses, preparing for funerals, and observing rituals of remembrance. The experience of being excluded, misunderstood or inadequately supported in times of grief has been increasingly recognized as common among autistic adults. In response the Autism & Grief Project was launched in September 2022 by the Hospice Foundation of America with a grant from the NLM Family Foundation. While the project is broadly applicable, its resources can be particularly valuable in rural areas where access to specialized support and services may be limited.
Guiding Principles
Autism and grief are both highly individualized, making each person’s life experience and grief journey unique. This website was designed to help visitors navigate and support the often rocky journey of grief and loss. Our intent is to provide reliable information and helpful suggestions that respect and acknowledge the grief experiences of adults with autism and fully involve them in the grief process. Accordingly, information is presented visually and through text to enhance accessibility for all users.
As we sought insight and advice from stakeholders, the following principles guided our team in the development of the website’s content:
Honor
We honor the individuality of the autism spectrum and the breadth of unique abilities, talents, and developmental capabilities that individuals with autism possess.
Diversity and Inclusion
We respect all individuals regardless of race, religion, gender, sexual orientation, income level, geographic location, or level of support needed.
Validation and Compassion
We recognize that grief is a deeply personal and individualized experience and validate the experiences and feelings of all grieving individuals.
Support
We strive to provide a wide range of supportive resources to meet the unique needs of our diverse audience.
Additionally, we recognize that the use of identity-first and person-first language is a personal choice and respect these views by using both styles throughout the site.
If you have helpful suggestions to improve this site, please let us know by clicking the Feedback link at the top of this page.
The Creators
The Autism and Grief Project website was created by the Hospice Foundation of America, the premier expert on grief and end-of-life care, in partnership with the NLM Family Foundation. The Hospice Foundation of America is deeply grateful to the NLM Family Foundation for their inspiration and generous support for the Autism and Grief Project.
Hospice Foundation of America
Hospice Foundation of America (HFA) is an education-oriented foundation that focuses primarily on advance care planning, end-of-life care, grief, and research related to those topics. Our significant national projects, which include private and publicly-funded research, seek to improve the end-of-life and grief experience for all Americans. Founded in 1982, HFA has several important constituencies: the U.S. public, healthcare professionals, and grief professionals. Our professional education programs and books help to establish best practice around patient and family care. As a charitable organization, HFA offers the public information and free resources about end-of-life care, caregiving, and grief. HFA is a 501(c)(3) nonprofit organization whose mission is to provide leadership in the development and application of hospice and its philosophy of care with the goal of enhancing the U.S. healthcare system and the role of hospice within it.
NLM Family Foundation
The mission of the NLM Family Foundation (NLMFF) is to help people with autism lead fulfilling and rewarding lives. The Foundation is committed to understanding autism from a scientific perspective, increasing opportunities and services available to the autism community, and educating the public about autism. In pursuit of this mission the Foundation develops program grants in several areas. The Foundation’s scientific program seeks to achieve a deeper understanding of the biological basis of autism. NLMFF founded one of the first major integrated health care centers offering clinical, research, and training programs dedicated to treating individuals with autism and related conditions across the lifespan. The Foundation also supports capacity-building in selected autism-serving nonprofits, education of the public to increase understanding of autism, inclusive community and recreation opportunities, and examination of public policy issues impacting the autism community. Founded over 40 years ago, the NLM Family Foundation is one of the largest supporters of initiatives in these areas. To learn more please visit www.nlmfoundation.org.
Project Advisory Board
William Gaventa, MDiv, National Collaborative on Faith and Disability
Jill Harrington-LaMorie, DSW, LSW, The Chicago School for Professional Psychology and Rutgers University School of Social Work
Trace Haythorn, PhD, MDiv, Association of Clinical Pastoral Education
Alex LaMorie, Student
MeiMei Liu, Author
Ricki Robinson, MD, MPH, Descanso Medical Center for Development and Learning
Paula Shelley, PhD, Artist and Professor
Serena Wieder, PhD, Profectum Foundation
Beth Zwick, NLM Family Foundation
Deborah Gonzalez (2020-2021)
Denise Rollins (2020-2021)
David Stevenson (2020-2021)
Project Team
Amy Tucci, President & CEO, Hospice Foundation of America
Kenneth Doka, PhD, MDiv, Senior Vice President, Grief Programs, Hospice Foundation of America
William Gaventa, MDiv, National Collaborative on Faith and Disability
Beth Zwick, Program Officer, Nancy Lurie Marks Family Foundation
Rebecca Morse, PhD, Divine Mercy University
Cindy Bramble, Director of Special Projects, Hospice Foundation of America
Lisa Veglahn, VP of Education, Hospice Foundation of America
Lindsey Currin, Senior Program Officer, Hospice Foundation of America
Meggie Beaudoin-Kobb, Project Consultant (2019-2021)
Lisa Morgan, MEd, CAS, Project Consultant (2021-2023)
Autism & Grief Logo
Jordan Brown, designer
Jordan was inspired to create this logo for the Autism & Grief Project because she wanted to communicate to other autistic people, particularly autistic adults, that we are not alone. She believes that all of us deserve to know there are people and resources out there to support us through tough times. Even when it seems like the sun has gone down, there will be light again, and there are people who can help guide us through the night.
Jordan (she/her or he/him) is a student, poet, and community organizer from Georgia, currently living in Washington, DC. Jordan is particularly interested in making activist spaces more accessible, inclusive, and community oriented. She currently works in the field of strategic communications and is in training as a restorative justice practitioner. Jordan identifies as a Black, queer, disabled, gender non-conforming woman.
News & Press
Autism & Grief Podcast: Ken Doka, PhD, MDiv and Alex LaMorie, Autism & Grief Advisory Board Members
Autism & Grief Project Reports Steady Increase in Website Traffic – Press release 10/11/24
Adults with Autism Grieve, Too – by Ken Doka, PhD, MDiv, Autism & Grief Advisory Board Member
Autism Acceptance Month 2024 Newsletter – Hospice Foundation of America 4/1/24
Autismandgrief.org Gaining Popularity by Addressing an Overlooked Topic – Press release 11/6/23
AutismandGrief.org Video Wins Marvels of Media Documentary Short Award – Press release 3/22/23
Autism Stories Podcast: MeiMei Liu, Autism & Grief Advisory Board Member
Helping adults on the spectrum with grief – by Alex LaMorie, Autism & Grief Advisory Board Member
How a Pasadena poet uses the gift of words to help autistic adults process grief — including her own: MeiMei Lui & Ricki Robinson, Advisory Board Members
Make the time and effort to acknowledge autistic individuals’ grief – by MeiMei Liu, Autism & Grief Advisory Board Member
Neurotypical or not, we all need to act out in grief – by Bill Gaventa, Autism & Grief Project Consultant
Whatever form an autistic person’s grief takes, acknowledge it – by Lisa Morgan, former Autism & Grief Project Consultant
Acknowledgements
The project team sincerely thanks the following individuals and organizations for their valuable contributions:
Dilshad Ali
Katie Arnold
Rabbi Allison Berry
Noah Bittner
Adam Brand
Ralph Brown, III
Shelly Christensen
Exceptional Minds Studio
Laura Gaffney
Heather Hays
Karen Jackson
Dania Jekel
Suheil Laher
Meghan Lee
Sam Levine
Kimberly MacKenzie
Rachel Minnaar
Dan Moss
Christina Nicolaidis
Liz Offen
Lara Palay
Rev. LaTonya Penny
Rabbi Ruti Regan
David Rozensweig
Neil Rubino
Debbie Schmidt
Erika Schwartz
Frank Sesno
Sehrish Shikarpurya
Cantor Linda Sue Sohn
Yaffa Tilles
Mary Beth Walsh, PhD
Rebecca Wanatick
Eli Weider