Supporting an Individual with ID During the Grieving Process

By Margaret Walsh, M.A., BCBA                                                               
  
[This column was published in the West Springfield Republican on August 21, 2025.]
                                                                                                    
When a cherished person dies, the challenge for the living is to find a way to honor the deceased loved one while trying to learn to live without them. While adjusting to this loss, a person is most likely to experience grief.

Grief impacts our emotions and our physical and mental health. It can cause us to question spiritual beliefs, change the way we react to basic daily routines, and challenge our relationships with loved ones. No one experiences grief in the same way, and it isn’t clear when it begins and ends. Adults with intellectual disabilities (ID) also experience grief. Recognizing it and supporting a person with ID as they process grief can be demanding for caregivers.

Talking about death and grieving is an unwelcome conversation for most people, including those with ID. The truth is, avoiding sadness and the myriads of complex emotions around the loss of a loved one can hinder the process of grieving. Unacknowledged or unaddressed sadness can also lead to significant health problems. For adults with ID, caregivers need to initiate these conversations sensitively and in a way that takes their needs into account.

Be direct by saying that the person died instead of passed away. Indirect language may be unclear or confusing to some adults with ID. Try to keep the conversation simple, expect and validate the person’s emotions, and allow them to ask questions. They may need additional communication support in order to process what you are saying. Be sure to use communication methods that work for the individual. For example, some nonverbal adults need icons and communication devices to better convey their understanding of a conversation.

After having the conversation, caregivers need to be ready to talk freely about the loss and check in with the person frequently. Just because someone isn’t talking to you about loss does not mean they have processed it fully.

If the person with ID is willing, it can be helpful to involve them in planning and holding a memorial service for the deceased. It can be as simple as picking out a special song to play, selecting pictures of the loved one to share, or choosing flowers.

A memorial service is a time for a wide variety of people who knew and loved the deceased to come together and grieve. Caregivers will need to talk to the person with ID about what happens at a funeral and prepare them for unexpected social interactions with family members and friends. It is likely that seeing other people crying or acting differently will be challenging for them. Caregivers can address this by discussing grief and what it looks like for others. Having a back-up plan or discussion with an adult with ID about what they can do if they need space or are feeling uncomfortable when they are at the funeral can help them develop healthy coping skills. 

After a person dies, it may help to create a memory book, plant a tree, or plan a trip to honor the spirit of that person. Making time to have a conversation about what the person with ID is experiencing and how they would like to honor their loved one is an important way to support them. 

Grieving a loss does not happen on a set timeline. Some days will be better than others. The important thing to acknowledge is that grieving can lead us to a better appreciation for and understanding of the lives we all still have to live.


Margaret Walsh, M.A., BCBA, is the Assistant Director of Clinical Services for the May Center for Adult Services in Western Massachusetts. She can be contacted in West Springfield at 413-734-0300 (ext. 262) or at mwalsh@mayinstitute.org.


About May Institute
May Institute is a nonprofit organization that is a national leader in the field of applied behavior analysis and evidence-based interventions, serving autistic individuals and individuals with other developmental disabilities, brain injury, and neurobehavioral disorders. Founded 70 years ago, we provide a wide range of exceptional educational and rehabilitative services across the lifespan. For more information, call 800.778.7601 or visit www.mayinstitute.org.