How to Support Individuals on the Autism Spectrum Through Grief and Loss

Death and loss are a natural part of life. All of us will have this experience at different times in our lives. Because of the pandemic, families may be experiencing more loss and changes at this time. There have been so many challenging situations – death of a loved one, long term illness, job loss, unavailability of favorite activities, shut down of community places/spaces, loss of support, changes in routines, and increased isolation. These events are significant and can cause feelings of grief and despair.

Sometimes change and loss are expected and those events can be planned for like a long-term illness or a divorce. In this instance, a support plan can be made in advance. Loss can also be sudden and take us by surprise, like an accident. Advance support plans won’t be in place for a situation like that.

It’s important to be able to provide support to children and adults on the autism spectrum with the grieving process in experiencing loss. Their reactions may be delayed or more intense than expected. There may also be questions and concerns around making life predictable again, to provide comfort and a sense of well-being.

Reactions to Grief

Emotions

Expressing emotions can be difficult for people on the spectrum but that doesn’t mean that there are not deep feelings. My daughter, Julia, has a difficult time crying but is a very sensitive person. Another friend of mine said she cried for the first time at the age of 19. Sometimes, the opposite emotion is shown when grieving like laughter; however, this doesn’t mean that the person is happy. When my children were younger, they often laughed when I was crying. Emotional reactions can be delayed until they are processed, particularly around traumatic events.

The following reactions can be part of the grieving process and support should be provided:

• anger
• aggression
• becoming demanding
• anxiousness
• crying a lot
• withdrawing and becoming unresponsive
• appearing calm – unconcerned or in control, detached

Cognitive Concerns

A person may be worried about what caused the event or that it will happen to them. Many people also feel guilty when a loved one dies. Depending on age and cognitive understanding, they may not fully understand what has happened, when it might end, and who will take care of them.

Some cognitive effects can be:

• difficulty processing information
• confusion
• unable to express feeling or ask questions
• unable to ask for help or clarification around the situation
• talkative – asking the same questions repeatedly, wanting reassurance
• asking about practical things like who will make their meals
• an increase in problems with executive function skills (problem solving, being on task, getting started)
• feeling out of control
• preoccupation with the person who is gone
• may be worried that the people close to them will also die or leave them

Behavioral Responses

Responses can really vary depending on the person – some will have no reaction and in others, it may be delayed. Sometimes a reaction can happen months later, making it hard to realize it’s connected to a past event like death or divorce. Behaviors may surface again on the anniversary of a loss. It’s important to try and address the cause of any change in behavior and provide support.

Some behavioral reactions are:

• throwing things or destroying property
• hurting oneself or others
• increase in repetitive or stimm behaviors
• irritability
• wanting to be alone
• regressions and/or loss of skills

Physical Reactions

Loss situations can also cause physical reactions. The body responds to stressful events and loss in numerous ways. Here are a few:

• loss of appetite
• not sleeping well
• personal hygiene tasks are neglected
• aching body
• fatigue
• loss of bowel/bladder control
• intensification of sensory overload

How do we provide support?

There are a lot of materials available to provide support through the grieving process for individuals on the spectrum.

Keep in mind:

• Everyone’s process if different.
• Validate all thoughts and feelings.
• Keep discussions and materials appropriate for both age and developmental level.
• Keep daily routines consistent to provide predictability.
• Be patient.
• This can be a confusing and anxious time, especially if other people at home are acting differently.
• Avoid trying to make things “all better”. This is a process that has to be worked through.
• Try to make abstract concepts like death concrete. Avoid using expressions like passed away, they went to heaven, we lost X.
• Use social narratives (a personalized story) to explain the details of the situation.

Resources on Death

Children

7 Ways to Help a Child with Autism Deal with Death

Bereavement – a guide for parents and carers

Coping with Loss: Recommendations for Supporting Individuals on the Autism Spectrum through Grief

Gray’s Guide to Loss, Learning and Children with ASD

Helping Autistic Children Understand Death and Dying

Pathfinders for Autism – Death and Grieving

Supporting Grieving Children with Autism Spectrum Disorder

Adults

Autism and Bereavement Video – Purple Ella

Autistic Grief Is Not Like Neurotypical Grief

Bereavement and Autism: A Universal Experience with Unique Challenges

Navigating Grief and Loss as an Autistic Adult

Explanations with Visuals

My Special Person Died

When a Person Dies

When Someone Dies

Going to a Visitation

Going to a Funeral

Going to the Cemetery

References for this Blog Post:

Supporting Individuals on the Autism Spectrum Coping with Grief and Loss through Death or Divorce – Marci Wheeler, MSW