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Unfortunately, loss is a part of life. Great things come with meaningful relationships and routines, but it is impossible to ignore that death, divorce, and other losses are possible and at times, inevitable. Grief is most associated with death, but really, any loss can cause grief. Loss of a favorite toy or routine as well as the loss of a house, school, or a certain family structure can be very significant, especially for individuals on the autism spectrum.

Navigating these topics with a loved one on the autism spectrum may seem challenging to caregivers. How much information should you give? What happens if you give too much information, or too little? While every decision is individualized for each family, it is critical to respect the rights of the individual with autism by providing critical information. Although conversations about loss may be difficult to helm, the confusion and anxiety brought about by unexplained changes may be even more detrimental to the individual long term. Changes run parallel with loss and impact all who surround that loss. If these changes occur without context, that person may be unlikely to access appropriate supports, learn proactive ways to express their grief, or understand what to expect moving forward.

This article will make recommendations for how to educate about a loss, strategies for supporting comprehension, and guidelines on how to support your loved one with autism following a loss.

 

Educating about a Loss

If possible, provide education before a loss can occur. Concretely describe what to expect, at your learner’s level, and use visual supports or social narratives if needed. Explain what will change, how it will change, and what will stay the same.

Guidelines for discussing specific types of loss:

Death:

• Be honest and concrete. Be straightforward and describe what exactly happens to our bodies and what that means. Death may be made clearer by explaining it in terms of the absence of familiar life functions. For example: When someone dies, their heart stops. Their body stops working. They don’t eat. They don’t breathe. Give more concrete information about what the meaning of death is as needed.
• Avoid euphemisms. Using terms such as “going to sleep” or “passing away” can be confusing for someone who interprets most language literally. If your belief system includes heaven, help your loved ones understand that heaven is not a place that you can simply drive to.
• Take things slowly. People process death in bits and pieces, over time. Helping someone to understand the permanence of death may require time. Expect questions! Many individuals with autism learn through repetition so they may need to go over this quite a few times with multiple examples. A loved one may immediately ask more questions, while others may be silent, then wish to revisit the subject again later.
• Teach all parts of the life cycle: We all are born, we all live, we all die. As part of a fuller discussion, provide equal education on life and death. You could explain death within a life cycle, possibly using insects, plants or animals to demonstrate this. This biological approach is practical, clear, and could be presented visually. Try to reinforce the concept that all living things eventually die, but it makes room for new things to join us on earth. Your explanation of what death is will be determined by your own beliefs and values.
• If appropriate for your learner, discuss causes of death (e.g., injuries, diseases, and accidents).

 
Divorce:

• Teach about different family models. Incorporate books and other materials that represent children who are raised by single parents, by same-sex parents, by grandparents, in blended families and in families with mixed race, religion, and ethnicity. This will foster flexible thinking regarding familial relationships.
• If anticipating a divorce or separation, incorporate material that is specific to the change. At the bare minimum, provide details prior to the change; include what will change and what will stay the same, using visual supports where appropriate (e.g., a picture of dad’s new house when discussing that he will move out) and be deliberate in creating a custody schedule or structure that will remain consistent. Custody, if split, can be confusing to predict for many children. Create a weekly visual schedule, perhaps with pictures of mom and dad or each house and reference this framework when discussing upcoming events.
• Provide assurance to your loved one with autism that they will always be cared for, and that they have done nothing wrong. Always keep discussion about/interactions with involved any parties civil and neutral when observable.

 
Illness:

• Educate about lifespan and health. Explain that all old people eventually die, but also point out that people can die if they become very ill. Give different examples of things that only hurt (e.g., a stomachache) and things that cause death (e.g., a car accident). Provide assurance that it is unlikely for young, healthy people to die.
• If someone in the family is ill, it is best to explain some or all of the following information: what is happening, why they keep going to the doctors or spending time in hospital, any change or expected change in the person’s appearance, the progression of the illness by charting a timeline alongside other significant events, and any changes in routine, such as who will pick them up from school.

 

Recognizing Grief

Grief is an individual experience for every person. Individuals with autism may have a hard time expressing their feelings or may express their feelings in a way that is unrecognizable to neurotypical caregivers or loved ones. Reactions to loss may be public (outward display of emotion) or private and can be immediate or delayed. It is important to differentiate between feeling emotions versus expressing emotions. Just because the person does not appear to feel a certain way, does not mean that they are not feeling a certain emotion. On some occasions, the emotion felt may be displayed in a manner which is the opposite of the emotion they are feeling (e.g., laughing when they feel nervous around sad people). Be aware that the emotional expression might not be congruent with the feeling and that this confusion is not uncommon in grief.

Following a loss, observe carefully for any changes to your loved one’s emotional state, cognitive ability, behavioral health, and physical health. Note any differences and provide support. If there are other people involved in the person’s care, alert them of these changes and advise them on how to accommodate. It may take extra time for individuals with autism to process a loss; changes, which are still connected to the loss, may occur weeks or months after the event and should be treated gently as they may be grief related. These changes may also be likely to recur during sensitive times, such as the anniversary of the loss, during holidays when there would usually be shared time with the person, or during times of increased stress. No matter how people cope with loss or express their feelings, iterate that ALL feelings and types of expression are okay, and provide sensitive and nonjudgmental support.

Some of the possible emotional, cognitive, behavioral, and physical reactions are shared below. These reactions may appear in isolation or in combination.

• Potential emotional expressions may include the person: acting angry, becoming aggressive or combative, being more demanding/attempting to exert more control over the environment, seeming anxious, crying or becoming tearful more often, engaging in withdrawal or unresponsiveness, or appearing unconcerned or totally in control.
• Potential cognitive effects may include the person: having a hard time processing information, feeling confused more than usual, being unable to articulate feelings or ask questions, having a hard time with managing/organizing their usual schedule or remembering responsibilities, being preoccupied with specific topics such as death or the person who was lost, asking questions more frequently than usual, asking for assurance more frequently, or being preoccupied with the permanency of other familiar people in their lives.
• Potential behavioral changes may include the person: acting out physically, such as throwing things or destroying property, attempting to hurt themselves or others, showing an increase in repetitive or self-stimulatory behaviors, becoming more irritable, seeking solitude more often, or experiencing a regression or loss of skills.
• Potential physical responses may include the person: having a change in appetite, toileting, or sleep patterns, experiencing increased fatigue or sensory sensitivities, experiencing increased body aches or headaches, or having a harder time with grooming and other hygiene routines.

 

Helping Your Loved One Cope with Loss

Provide assurance. When a loved one is grieving, make sure the loved ones knows who their friends and family are and assure them that they will always be cared for. Assure the person that they are safe and are not in danger.

Model forward thinking. Convey to your loved one that life is going to go on, that they’re going to be okay (even if it’s hard right now!), and that there are still things to look forward to. Point to specific examples, “hey, I know today is rough, but I can’t wait to get ice cream with you tomorrow!”

Try to keep other aspects of life as consistent as possible. As we know, people with autism can have significant difficulty when their anticipated schedules change. As soon as it is possible, try to have your loved one resume normal activities. Even if it is impossible to resume a full schedule, attempt to find a few routines which can remain consistent.

 

Remembering the Lost

Help your loved one understand that even though they will not be able to visit or speak to the deceased person, pet, or other beloved, it is okay to miss them. Offer ways to cope and feel connected to the lost.

Here are a few ideas:

• Create a memory box of items as a reminder of the beloved. Consider incorporating pictures, music, smells, and/or tactile items that are reminiscent and can help the person feel connected to the lost.
• Encourage the person to do something that used to be done with the deceased person, but with someone new, in honor of the deceased person.
• Write letters, journal, and/or draw pictures of memories.

 
If repetitive talking about the deceased person, pet, or other beloved, is seen as a problem, it might be helpful to provide the individual with autism spectrum a regular time, place, and person with whom they can discuss the topic.

 

Religion, Rituals, and Traditions with Death

If your loved one is to attend a funeral or other rite, they need to be prepared beforehand for what they might see and hear before, during, and after the service, and they should have a choice about whether they will attend. If they opt to participate, seat your loved one next to you or someone they are familiar with who can be prepared to offer explanations, answer questions, monitor for any changes in affect or behavior that indicate discomfort, and can potentially escort the person away from the ritual if needed.

If there are religious influences on the rituals and traditions, ensure that your loved one is accustomed to necessary terms so they feel familiar and can understand. If religion has not played a part in your loved one’s life before dealing with death, it may be very confusing and worrying to hear religious references, such as “He is with God now”; this may imply that God may come and take away other loved ones without warning.

In lieu of, or in addition to other rituals, it may help to establish a ritual within the family when someone dies, such as lighting a candle and thinking of the deceased person or by keeping a picture of the person in a low-traffic area where loved ones might sit and “visit.” The addition of rituals may help the individual to cope. Independent initiation of these rituals may serve as a signal to caregivers that the person is still grieving and may need additional supports.

 

In Summary

Loss is depleting, especially losses that impact the entire family system. While loss is difficult to talk about, it is important to provide education and assurance to our loved ones so they know what to expect and how to access support moving forward.

 

Additional Resources

Social Narratives

These are just examples of how to explain difficult and painful topics. It is very likely that these narratives would need individualization (changing words, pictures, and examples) in order to be most appropriate and effective.

Death and Loss – Parent

Death and Loss – Pet

 

Books

Understanding Death and Illness and What They Teach about Life: An Interactive Guide for Individuals with Autism or Asperger’s and their Loved Ones by Catherine Flaherty 

It’s Ok to Feel This Way by Susan M. Funk

Autism and Loss by Rachel Forrester-Jones 

Finding Your Own Way to Grieve: A Creative Activity Workbook for Kids and Teens on the Autism Spectrum by Karla Helbert

 

Lea Crusen, MA, LPA, BCBA, is a member of ASNC’s Clinical Department in the Wilmington Region and can be reached at lcrusen@autismsociety-nc.org.

 ASNC’s Clinical Department staff is composed of PhD and master’s-level licensed psychologists, Board Certified Behavior Analysts, and former special education teachers. We provide individualized intensive consultation using evidence-based practices to support children and adults across the spectrum in home, school, employment, residential and other community-based contexts. We also deliver workshops to professionals on a wide range of topics including but not limited to, strategies to prevent and respond to challenging behaviors, best practices in early intervention, functional communication training, and evidence-based practices in instruction for K-12 students with autism.

To find out more, contact us at 919-390-7242 or clinical@autismsociety-nc.org.

Tags: autism, autism asperger parenting tips, autism behavior, autism communication, autism resources, autism social skills, Autism spectrum