Why Grief May Not Look the Way You Expect

A narrow dirt path that winds its way through tall grass.

Grief is often spoken about as though it follows a pattern. There is an expectation that it will look a certain way, move through certain stages, and eventually soften over time. While this may be true for some, it does not hold true for everyone, and it is especially not the case for many individuals within the IDD community.

For people with intellectual and developmental disabilities, often referred to as the IDD community, grief may show up in ways that are not immediately recognised as grief.

What is grief? Grief may arise from a particular event, such as death or dying, but it can also stem from chronic sorrow, ambiguous loss, anticipatory grief, non-finite loss, pet loss, trauma, terrorism, institutionalisation, loss of sexuality, loss of ability, prejudice, labelling, and more. It can be expressed as shock, sadness, anger, denial, bargaining, depression, longing, relief, release, or freedom... in any way imaginable. It is unique to each person and situation. There is no universal approach to grieving or handling loss.

Given that grief within the IDD community is often about cumulative losses, the most recent loss experienced might not be the only loss they are grieving.

In the IDD community, it may not be expressed through words. It may not appear as sadness. Instead, it can look like changes in behaviour, withdrawal, agitation, or even what is sometimes interpreted as regression. When this happens, the grief itself is often missed, and the response becomes focused on managing behaviour rather than understanding what is underneath it.

This is where many individuals begin to lose ownership of their grief.

Grief requires recognition. It requires space. Without these, it can become something that is carried without language or support. For individuals in the IDD community, there are often additional barriers to this recognition. Information about death and dying may not be shared in a clear or accessible way. Decisions may be made on their behalf without their full understanding. Opportunities to participate in mourning, ritual, or remembrance may be limited or removed entirely. They might not have the words to express what they are feeling.

When grief is not acknowledged, it does not disappear. It changes form.

Grief may not always look the way others expect, but it is no less real or meaningful.

There is also a tendency to underestimate what someone understands or feels. In an effort to protect, we may simplify, avoid, or withhold information. While this is often well-intentioned, it can create confusion and isolation. A person may sense that something has changed or that someone is gone, but without clear language or inclusion, they are left to make sense of it on their own. Over time, this can lead to a kind of cumulative grief. Loss is not always a single event. It can be layered—changes in environment, relationships, routines, or abilities. Each of these experiences carries its own form of loss. Without the opportunity to process them, they build.

This is why it is important to consider not only how grief appears, but how it is supported.

Support does not need to be complex. It begins with recognition. Naming the loss. Speaking about what has happened in a way that is accessible and honest. Allowing space for response, even if that response does not fit what we expect. Grief does not need to be corrected or redirected. It needs to be accompanied.

When individuals are supported in understanding their grief, something else becomes possible. They begin to build a sense of agency around their experience. They are not simply reacting to change, but are given the opportunity to engage with it. This can look like participating in rituals, creating meaning through memory, or finding ways to express what is difficult to put into words.

In this way, grief can become part of building resilience.

Not resilience as something that removes or resolves grief, but resilience as the ability to remain connected—to self, to others, and to meaning—even in the presence of loss.

For the IDD community, this kind of support is not always available. There are still significant gaps in services and understanding. Many individuals and families are navigating these experiences without guidance, often relying on systems that are not designed with their needs in mind.

This is why it matters to speak about grief differently and to understand the root causes of complex grief.

Grief is about a broken heart, not a broken brain - The Grief Recovery Handbook (2017)

To recognise that grief does not have one expression. To understand that behaviour may be communication. To make space for individuals to be included in conversations about death, dying, and loss. And to ensure that support is not something that is withheld, but something that is built around the person.

Grief, when acknowledged and supported, is not something that limits a person. It becomes something that can be integrated into their experience of the world, allowing them to continue forward with greater understanding, connection, and agency.

And that begins with seeing it for what it is.