Supporting Someone with Autism Through Grief and Loss: A resource for families, caregivers, and professionals

All responses to grief and loss are valid responses in the grieving process.

• Everyone needs the opportunity to grieve in their own way and on their own time.
• Sometimes, families, caregivers, and professionals withhold information about loss from someone on the spectrum, anticipating that they may not understand.
• Shielding an individual from anxiety-inducing situations, such as death and loss, can increase their anxiety and confusion.
  • They may be more aware of the changes in the mood and actions of people at home, leaving them with no understanding of why, which causes an increase in their anxiety and confusion.
• Factor in autism, age, past experiences, communication skills, and developmental level when understanding an individual’s grief process.

Four areas that are affected in the grief process, and examples:

1. Emotional Reactions

• Restlessness and anxiety.
• Trouble connecting with emotions.
• Sadness and frequent urges to cry.
• Aggression, anger, or demanding.
• Increased sensory overload.
• Feeling overwhelmed.
• Meltdowns. Shutdowns, withdrawal, or unresponsiveness.
• Unusual reactions include: Excitement, laughing, calm, unconcerned, or composed.

2. Behavioral Response

• Acting out physically, throwing things, or destroying property.
• Hurting themselves or others.
• An increase in repetitive or self-soothing behaviors.
• Irritability.
• Desire to be alone.
• Regression and loss of skills.

3. Physical Responses

• Difficulty going to sleep or staying asleep.
• Fatigue.
• Changes in appetite.
• Stomachaches or headaches.
• Harder time completing grooming or other hygiene routines.
• Feeling sad and like crying all the time.
• Difficulty managing sensory overload.

4. Cognitive Effects

• Confusion and difficulty processing information.
• Difficulty expressing feelings and/or asking questions.
• Unsure of expectations and unable to seek help or clarification.
• Lacking the capability to inquire about anticipated events/outcomes in the upcoming days.
• Asking the same questions and seeking reassurance.
• Asking practical questions about who will help them with daily tasks or routines.
• Executive functioning problems (i.e., organizing, remembering things, paying attention, getting started on tasks).
• Overly focused on the person who has died or is “gone.”
• Overly focused on familiar people in their lives, and concerned that they will also go away.

Supporting Strategies

Acknowledge and Reassure

• Allow them to express their feelings.
• Be concrete and give honest responses.
• Do not give platitudes like “I know how you feel.”
• Remember the person’s developmental level in your responses
• .Reassure them that they are not the cause of the loss.
• Reassure them their reactions are okay.

Information and Routines

• Keep routines as much as possible.
• Be prepared to answer questions about how their daily lives might change.
• Help them keep eating, exercising, and maintaining sleep routines.
• Create new routines that have been disrupted by loss.

Concrete Examples

• Avoid phrases like “passed away,” or“ we lost…”
• Use multiple concrete examples of death (compare a live bug to a dead bug).
• Read a book or view a video about death.
• Explain the rituals/routines that they can be a part of.
• View the funeral home website to see pictures of the funeral’s location.
• Create a photo album or scrapbook.
• Make a memory box and tie items to visuals, smells, and other senses.

Create Social Stories/Narrative

• Explain what will change vs. what will stay the same.
• Include details of each event/situation and what actions are expected of them.
• Include a phrase they can say when someone speaks to them about the loss.
• Include visuals (pictures of individuals, places, and routines).
• Include where there is a pre-arranged place to take a break and/or be alone during funeral activities.

Counselling/Therapy

• Find a trusted person for the individual to talk to.
• If needed, find a grief counselor who is knowledgeable about providing support for individuals with ASD.