Complicated Grief and IDD: When Grief Gets Stuck

Complicated grief is grief that stays severe and does not ease over time. Most grief slowly softens. With complicated grief, the pain stays sharp and gets in the way of daily life.

This matters for BCBAs, day hab staff, and group home teams. Many people with disabilities lose parents and caregivers. When grief support is thin, that grief can get stuck. Knowing the signs helps you get a person the right help at the right time.

What complicated grief means#

Grief is normal and healthy. It is the pain we feel after a loss. Complicated grief is different because it is heavier and lasts far longer than usual.

Tricia Lund describes it in plain terms. She ties it to a name used in the DSM, the manual clinicians use for diagnoses.

Complicated grief is when you are experiencing grief that is more severe and is lasting longer than is typical... there are diagnoses in the DSM, specifically prolonged grief disorder, that do address this difficulty with grieving and moving through experiencing a death loss From the talk — Tricia Lund

So complicated grief and prolonged grief disorder point at the same problem. The grief does not move. It keeps a person from getting back to life.

The problem with a strict timeline#

Grief does not run on a clock. People move through loss at their own pace. Lund pushes back hard on the idea that a set number of months defines a disorder.

despite the fact that the DSM says that if you grieve longer than six months, you have prolonged grief disorder, which is just crazy to me... grief is not on a timeline From the talk — Tricia Lund

Her worry is fairness. A six-month rule can turn normal, deep grief into a label. Some losses simply take longer to carry. A timeline can rush people who need more time.

Why people with disabilities get this label more#

Here is a key point from Lund's talk. People with disabilities often get the complicated grief label. But the reason is not that they grieve wrong.

people with disabilities are more likely to get this diagnosis because, like we mentioned, they're not getting the support that they need From the talk — Tricia Lund

Many are left out of the loss. They may not be told a parent died. They may miss the funeral or have no one to talk to. Without support, grief has nowhere to go. Then it looks "complicated" when the real gap was care.

When to bring in a mental health professional#

Sometimes grief does veer into a pattern that needs more help. This is where a BCBA works with a licensed counselor or therapist. A mental health professional can spot a diagnosable condition.

Lisa Trevlyan lists what a professional might see when grief turns maladaptive.

This could include diagnoses like a prolonged grief disorder, depressive or mood disorders, even post-traumatic stress disorder, especially if they've witnessed a violent loss, separation anxiety. From the talk. Lisa Trevlyan

This shows why teamwork matters. Grief can sit next to depression, trauma, or deep worry about being left. A BCBA supports behavior and daily routines. A counselor handles the clinical diagnosis and therapy. Together they cover more ground.

How complicated grief can look in behavior#

Grief does not always look like sadness. In people with disabilities, it can show up as new behavior. A person may act out, withdraw, or stop eating well.

Staff who do not know the history may misread these signs. They might call it a behavior problem and miss the loss behind it. That is why knowing a person's recent losses is so important.

A BCBA is well placed to notice these shifts. You track behavior closely and see change over time. When new behavior follows a death, grief belongs on your list of possible reasons.

Support first, labels later#

The big lesson from both talks is simple. Support comes first. A diagnosis should never replace good, patient care.

People grieve on their own clock. A person with a disability may need extra time and help. They may need the loss explained in plain words. They may need a chance to take part in rituals.

When that support is present, much stuck grief starts to move. When it is missing, grief looks worse than it needs to. So build the support, and be slow to reach for a heavy label. Give the person time, warmth, and a real place to grieve.

What the research says#

Research shows people with intellectual disability do experience complicated grief. A systematic review pulled together studies from 1999 to 2022. It found complicated grief is both underestimated and clinically important in this group.

Grief in this population can also show up as new behavior problems. One carer-based study looked at adults with intellectual disability after a parent's death. About one-third showed ten or more clear symptoms of complicated grief.

Treatment research is still growing. One new study protocol tests a fresh method for prolonged grief. It helps people rework painful memories of the loss in a few guided sessions (Petkovski et al., 2026). Work like this shows the field is taking stuck grief seriously.

FAQ#

What is the difference between grief and complicated grief?

Grief is normal pain that slowly softens over time. Complicated grief stays severe and does not ease. It keeps getting in the way of daily life and function.

Is complicated grief the same as prolonged grief disorder?

They point at the same problem of grief that gets stuck. Prolonged grief disorder is the formal name in the DSM. Many clinicians use complicated grief in everyday talk.

Why are people with disabilities at higher risk?

They often miss support after a loss. They may not be told, or may be left out of rituals. Without help, grief has no outlet and can get stuck.

Lund and a licensed counselor go deeper on this team approach. See Interdisciplinary Grief Support for People with Disabilities: Enhancing Outcomes Through BCBA-LPC Collaboration.