How Do People with an Intellectual Disability Grieve?

March 2, 2019
Death and loss are difficult for anyone to deal with, and the grieving process is often painful. But how is this process in people with an intellectual disability and what can you do to help them? Read on to find out more.

A child with an intellectual disability impacts the whole family. As the child grows, resources and all kinds of support become more and more necessary. However, in most cases, the families aren’t prepared to deal with everything that comes with having a special needs child.

Every parent of a child with an intellectual disability has asked themselves these questions: What will happen when we aren’t here anymore? How do people with a disability deal with grief?

Stages and types of grief in people with intellectual disabilities

Most authors agree that the grieving process has different stages. The process is the same in people with an intellectual disability. It starts with the initial impact and ends either with recovery or with the issue becoming chronic. We can organize this trajectory into four stages:

  • Initial impact: Confusion, shock. The first symptoms are denial, disbelief, and panic.
  • Anger and blame: Self-punishment ideas, rage, trying to find someone to blame, and abandonment.
  • The world turned upside down, desperation, withdrawal. Resistance to return to normal life, feeling of weakness, and a marked tendency towards isolation.
  • Acceptance and recovery: Hope returns. Although there are certain dates like anniversaries that make you feel like you’re going through prior stages of grief, you’re able to face reality due to the process that you went through already.
A girl with Down syndrome looking out the window.

There are two basic kinds of grief or ways to react after a loss: normal and pathological. What distinguishes these two basic types of grief is the intensity and duration of the symptoms and how much it affects your day to day life.

Normal grief ends when you reach the last stage of the process and get closure. When that happens, you’re in a position to recover the emotional stability that helps you deal with other problems.  Pathological grief, on the other hand, can happen in one of two ways:

  • Complicated unresolved grief: This is when you get stuck in one of the stages and feel the loss either very intently or as if you were anesthetized.
  • Psychiatric grief: This is when your grief triggers certain symptoms compatible with a possible diagnosis of a psychiatric disorder.

For people with an intellectual disability, grief is a process that starts with the initial loss and ends either with healing or a chronic problem.

How should we manage grief in a person with an intellectual disability?

Some general guidelines about what to do and say when facing a loss can help orient and channel all the expressions of sadness. It’s important, however, to be aware of personality traits and how severe the intellectual disability is.

After someone dies, you should be proactive and give the person the news right away. Here are some additional guidelines on how to break the news:

  • When and how to give the news? It’s painful and difficult, but the best thing is to do it in a simple way. Speak clearly and make sure they understand you.
  • It’s good to get the person to talk and ask questions. Show interest and concern about what the person with the disability feels. Don’t be afraid to name the person who passed away.
  • It’s helpful to clarify whether any symptoms are related to grief or if they’ll go away little by little.
  • Individualized attention: Keep their traits, history, response to other kinds of loss, etc. in mind. Remember what works and what doesn’t for approaching the subject.
  • Remember that you can make photo albums and other keepsakes. It could be useful to make an album or a memory box that will allow the person to relive certain happy moments.
  • In the case of the death of a close family member or friend, make them participate as much as possible in the memorial service. It’s important for them to feel involved and plan for future events.
  • Make sure the person with an intellectual disability sticks to their routines and daily activities as much as possible.
A boy with an intellectual disability.

An uncertain future

One of the greatest worries for parents of children with intellectual disabilities is what will happen when they’re no longer there. Who will take care of their child? Will they treat them well? Will they be left at home alone? Of course, no one can really answer these questions because the future is uncertain. However, being able to make tough decisions ahead of time means that no one will have to do it for you. That can help your loved one with an intellectual disability deal with grief in a less traumatic way.