Supporting Individuals on the
Autism Spectrum Coping with Grief
and Loss through Death or Divorce
Contributed by Marci Wheeler, MSW
Unfortunately, loss and grief are part of life. All people, including children and adults on the autism spectrum, grieve in their own unique ways. Grief can be complex for any of us. It is important to acknowledge that any loss can cause grief. Loss of a favorite toy or routine as well as the loss of a house, school, or family member can be very significant. All people need support and understanding when they are experiencing the challenges of loss and grief, including those on the autism spectrum.
Sometimes loss and change are expected and a plan for coping can be developed and followed in advance. This approach of advanced explanation and support can go a long way in easing the grief experienced when changes and losses occur for anyone, especially for individuals on the autism spectrum. Often, however, it is not possible to develop a plan of support in advance when a loss is sudden.
Even if a death or divorce is anticipated, plans for support are most often decided after the event happens. Family members are also experiencing loss and grief themselves and are uncertain how to plan and support themselves in addition to their loved ones with ASD. The focus of this article is on how children and adults on the autism spectrum may experience loss due to death or divorce and how to provide support through the grieving process.
Common Responses to Grief
It is important to know that everyone’s responses to grief can vary greatly. Some people may react with anger, some with tears, and others may withdraw and become non-responsive. Some may seem totally unaffected. For those on the autism spectrum, there could be a variety of emotional, cognitive, behavioral, and physical reactions to grief as well. Respecting the different responses to
grief is important. All reactions should be seen as valid. An individual with ASD may respond to divorce or a death situation very similarly to other family members. Their reaction might also be delayed and/or more intense than expected. They might react with very practical questions and concerns as they search for ways to make life predictable again. Some of the possible emotional, cognitive, behavioral, and physical reactions are shared below.
Children and adults on the autism spectrum may react to other’s emotions and physical changes. They may feel anxious or fearful of what caused the divorce or death. In the case of a death, the individual may wonder if the same thing will happen to them or others they know.
People with an autism spectrum disorder often have a hard time expressing their feelings. Sometimes the emotion felt, in this case grief, is displayed in a manner which is the opposite of the emotion they are feeling. For example, the individual laughs when others around are crying in their grief. It cannot be assumed that the laughing displayed means they are happy. Sometimes there appears to be a “scrambling” of emotions that takes place. This phenomenon has been explained by many people on the spectrum who can articulate their feelings. Unfortunately, when this happens, it is assumed they are not affected by the death, or worse, that they are happy the person is gone.
The list of emotional reactions below is very typical of all people. Sometimes “typical” reactions seen in individuals on the autism spectrum are not attributed to grieving, but are seen as behaviors that are inappropriate and interfering and, therefore, need to be stopped as soon as possible. Careful consideration should be given to the possibility of these emotional reactions being part of the grieving process. Support should be offered when these typical reactions below are seen:
• May become angry
• May become aggressive and demanding
• May be very anxious
• May cry a lot
• May withdraw and become unresponsive
• May appear very calm: either seemingly unconcerned or totally in control
The individual may question whether they are the cause of the death or divorce (though they may not be able to verbalize their concerns). Whether a person is on the autism spectrum or not, guilt is a common reaction when someone close dies and/or a divorce happens. Depending on age or developmental level, they may not really know and/or understand what is going on and when it might end. They may wonder who will be there to take care of them on a daily basis.
It is important to anticipate some of the cognitive affects listed below and realize support is needed.
• May have a hard time processing information
• May be very confused
• May be unable to express feelings and/or ask questions
• May be uncertain about what is expected and be unable to ask for help or to ask for information about what to expect and/or what will happen in the days to come
• May talk a lot: repeatedly asking questions, wanting reassurance, etc.
• May ask very practical questions about who will make breakfast and take them to school
• May have increased executive functioning problems (i.e., organizing, remembering things, paying attention, getting started on tasks)
• May feel like they have lost control of their life
• May be preoccupied with the person who has died or is “gone” due to divorce
• May be overly focused on the familiar people still in their daily lives and if they will also go away
It is possible that little or no change will be seen in the behavior of the person with an autism spectrum disorder who has experienced a death or divorce in the family. Individuals on the autism spectrum have processing delays that can result in their reactions being delayed. In fact, there may be a change in behavior that is extremely delayed. A response may come many months later, such that the connection between the problematic behavior and the death or divorce is not readily made or understood.
The list of behavioral reactions below is very typical of all people. As mentioned previously, sometimes “typical” reactions seen in individuals with ASD are not attributed to grieving, but are seen as behaviors that are inappropriate and that need to be stopped as soon as possible. Careful consideration should be given to the possibility of these behavioral reactions being part of the grieving process; even if they are delayed by months. Therefore, support should be offered. Be aware that behaviors may also be seen again on the anniversary of a loss.
• May act out physically throwing things or destroying property
• May hurt themselves or others
• May have an increase in repetitive or self-stimulatory behaviors
• May be very irritable
• May want to be alone
• May experience regression and loss of skills
Whether on the autism spectrum or not, many of these physical responses to grief are common for anyone. Sometimes, however, for a person on the autism spectrum these physical reactions are just seen as part of their disability and not acknowledged as part of the grief process. Again, remember that support is needed—not consequences for “bad” behavior.
• May have a loss of appetite
• May not sleep well
• May have a harder time with grooming and other hygiene routines
• May experience various body aches
• May experience fatigue
• May experience loss of bowel and bladder control
• Sensory overload may intensify
Factors Affecting the Grief Process
All people need the opportunity to grieve in their own way and in their own time. Individuals on the autism spectrum are no exception.
Depending on age and/or perceived level of understanding, individuals on the autism spectrum may be shielded from information and/or excluded from events at the time of a death or divorce. Family members and well-intentioned others may assume they do not need to share information about a death or divorce, because the individual on the autism spectrum will not understand the situation and therefore they do not need information and/or support.
Additionally, because an individual on the autism spectrum might become more anxious if told about a death or divorce situation, it may seem appropriate not to tell them about certain situations. In reality, not telling them very likely will make them more anxious and confused. They are likely to be aware that the mood of others has changed, and this will leave them with no understanding about why people at home are acting different. As confusion and anxiety builds, they do not get the support they need.
Clearly every individual on the autism spectrum is different and their level of understanding, ability to cope with stress, and response to loss and grief will be different. In addition to having an autism spectrum disorder, age, past experience, communication skills, and developmental level are all factors that need to be taken into consideration when understanding the grieving process for an individual. Be aware that the information provided here can be adapted for most children and adults on the autism spectrum when these factors are taken into account.
Affirm and Reassure
It is important to allow a person who is grieving to express their feelings and have their feelings acknowledged. Be there to listen. Be careful with assurances such as “I know how you feel” or “it is the best thing for everyone” which are generally not helpful and may seem to disregard the pain of the person who is grieving.
• Do not evaluate or judge the grieving process against that of others.
• Thoughts and feelings must be validated.
• Keep discussions consistent with developmental level.
• Reassure that everyone is different in their reactions to grief and that is okay.
• Reassure the individual that they are not the cause of the death or divorce.
• Be patient; there is no clear timetable for the grief process.
Comfort through Information/Routines
Individuals on the autism spectrum may need to be explicitly taught about death and/or divorce and how to cope with their feelings. Information may be most appropriate in smaller chunks. Ask if the child or adult has questions and try your best to answer questions and/or let them know you will find the answer if you do not know initially. Let them know that everyone in the family may have different feelings and that is okay.
Daily routines should be kept the same when possible. This predictability and consistency will go a long way to comfort the individual. Focus on the immediate concerns of the individual with ASD. It is important to listen to feelings and concerns with patience and without judgement or interrupting and trying to make things “all better.” Below are a few more specific suggestions to comfort someone on the autism spectrum through divorce or death.
• Read books and/or view videos about divorce/death to make the concept more understandable.
• Be prepared to answer questions about how their daily lives might change (or provide this information for an individual who is not asking or able to ask).
• If a divorce, explain that both parents love them but they cannot live together.
• If appropriate, verbalize and model what the individual might be thinking and feeling (be prepared and supportive even if they express a different point of view).
Concrete Activities (Divorce)
Divorce can be isolating for families. There are no set customs and routines for sharing grief with others and divorce can also divide families. Here are a few suggestions to help individuals with an autism spectrum disorder work through their grief:
• Explain that the divorce is permanent using concrete examples such as “mom and dad have decided they will always need to live in different houses.”
• Explain and be clear that the divorce is not their fault.
• Provide a visual schedule of when they will see the parent who has moved out and when they will be at home.
• Develop a “new” routine for the child or adult to stay in contact and visit with both parents. If possible, involve the person with ASD in the development of the new routine(s). Use a social narrative and/or other visuals to explain and follow the new routine.
• Create a photo album and/or scrapbook of each parent and reinforce that they will continue to do favorite things with them.
Concrete Activities (Death)
Death is a hard concept to grasp for those who have difficulty with abstract concepts. Be aware that persons on the autism spectrum process language very literally. Language should be as concrete as possible. Saying the person who died “went to heaven” can be very confusing and upsetting for some, as they want to go to heaven to visit the deceased and are told they cannot go there to visit. They also do not understand why the deceased cannot simply return from heaven to visit.
Do not use phrases such as “going to sleep,” “passing away,” or “we lost ____,” which have a different meaning when taken literally. If appropriate, death can be explained as the person is no longer able to move, talk, or breathe, etc.; their body stopped working and cannot be fixed.
Here are some concrete activities that may help individuals on the autism spectrum work through their grief:
• Use many concrete examples of death and what it means (might compare a live fish with a dead one for example).
• View videos and books about when someone dies to make the concept more concrete and understandable.
• Provide the opportunity for participation in the viewing, funeral, burial, and other bereavement rituals, if appropriate. Be sure to prepare ahead and explain what will happen (see social narratives below).
• Access and use one or both of the workbooks for individuals on the autism spectrum that are listed at the end of this article.
• Create a memory box of items as a reminder of the individual who is deceased.
• Use visuals, auditory, smells, and tactile items that are reminders of the deceased person as part of a discussion on death and/or include in a memory box. (Information that is tied to the senses might help make the situation more “real” and provide comfort).
• Create a photo album and/or scrapbook of the individual who has died.
• Do something together with someone new that used to be done with the deceased person, in honor of the deceased person.
• Write letters or a journal and/or draw pictures of the person who has died.
• If repetitive talking about the person that has died is seen as a problem, it might be helpful to provide the individual with ASD a regular time, place, and person with whom they can discuss the topic.
A social narrative is a personalized story used to explain details of situations: what will happen and what behavior is expected. A social narrative used for explaining death and divorce can make it easier for everyone to use the same information. Narratives should explain what will change, and how and what will stay the same. It could include very specific details of each event or situation and what actions are expected by the individual with an autism spectrum disorder, as well as information about what others will be doing. Including pictures of individuals, places, and routines involved can also help to explain the details and prepare the individual for changes and/or new events.
It may be important to include a phrase or two about what the person with ASD can say when someone speaks to them about the death or divorce. During bereavement ceremonies, it can be very helpful if a place to take a break and/or be alone were arranged in advance. Include this information in a social narrative. There is a wealth of information available about Social Stories™ developed by Carol Gray. Here is a link to a short article on the Indiana Resource Center for Autism about writing social narratives: https://www.iidc.indiana.edu/pages/Behavioral-Issues-and-the-Use-of-Social-Stories. At the end of this article, there are links to examples of social narratives to explain death and divorce that are provided by the Indiana Resource Center for Autism.
Cognitive Behavioral Therapy (CBT)
Many on the autism spectrum have a hard time articulating how they feel. They have a hard time processing and labeling their emotions, as well as the emotions of others. This is not the same as not feeling emotion. Though traditional psychotherapy is not appropriate for individuals on the autism spectrum, Cognitive Behavioral Therapy (CBT) has been found to be beneficial. Some modifications for the use of CBT with individuals on the autism spectrum are listed in an article by Tony Attwood (2004). See his article listed in the reference section at the end of this article.
CBT is only offered by trained therapists and is based on the theory that how people think, feel, and behave is connected. CBT uses various methods to help people become more aware of how they think. Changes in how they think can result in changes in how they behave.
If the grieving process appears to get complicated, it might also be appropriate to find a grief counselor who is knowledgeable about providing support for persons on the autism spectrum. It can be difficult to find a professional that is knowledgeable about grief counseling, CBT, and the autism spectrum. With no other options available, it might be helpful to find a counselor who has some knowledge of these different arenas who is able and willing to use the resources and references listed at the end of this article to modify their approach for the individual on the autism spectrum.
Loss and grief, death, and divorce are difficult subjects to discuss. It is important to understand the grief process your family member, student, friend, or client with an autism spectrum disorder is experiencing and be prepared to provide the appropriate support. Find concrete ways to explain death and divorce and provide tangible ways to help support individuals on the autism spectrum coping with death and divorce. Be patient and understanding and continue to support individuals, as long as needed, after the loss.
Books to explain illness or death for children:
These two books provide concepts and content that is very concrete and adaptable for use for some teens and adults on the autism spectrum. The two workbooks are both written for individuals on the autism spectrum and provide additional information which is helpful for family members and professionals.
Mundy, M. (1998). Sad isn’t bad: A good grief guidebook for kids dealing with loss. St. Meinrad, IN: Abbey Press.
A great book for children and adaptable for various situations (i.e., used as an outline for a more personalized social narrative). Each page contains about 2-3 short paragraphs and addresses one issue. A few of the issues include: Some Things will Stay the Same; Some Things will Change; Hug Your Family; It is Good to Share Your Feelings; It’s Good to Remember.
Rogers, F. (1988). When a pet dies. New York: G.P. Putnum’s Sons.
A book for younger children and focused on pets, but the content and concepts covered are helpful and can be adapted for other situations.
Two workbooks specifically for persons on the autism spectrum:
Faherty, C. (2008). Understanding death and illness and what they teach about life: an interactive guide for individuals with autism or Asperger's and their loved ones. Arlington, Texas: Future Horizons.
Comprehensive book/workbook written for individuals with autism of all ages. It is a great resource for family members and professionals to read for content and adapt as needed for others on the autism spectrum who need more specific support. Also includes a portion on sickness, injury, and recovery.
Helbert, K. (2013). Finding your own way to grieve: A creative activity workbook for kids and teens on the autism spectrum. London: Jessica Kingsley Publishers.
Book/workbook written for children and teens on the autism spectrum with tips for professionals who are supporting them in the process of grieving. Very adaptable and appropriate for adults, also. Includes various grief resources at the end.
Online resources specific to individuals on the autism spectrum dealing with the death:
Article: Fisher, K. Autistic grief is not like neurotypical grief.
Adult with autism explains how she dealt with the death of her father when she was 47 years old. She shares some very helpful and interesting insights:
Article: Death and grieving (published by Pathfinders for Autism).
Good article with tips for parents to support their child with autism dealing with a death. Can also apply to supporting adults on the autism spectrum. A few resources are given at the end including a concrete social story explaining death using a Disney character/movie the child, for whom the social story was written, was very familiar with: http://www.pathfindersforautism.org/articles/view/parent-tips-death-and-grieving
Blog Article: Wong, B. A. Bereavement and autism: A universal experience with unique challenges. Posted by The Arc Autism Now Project:
YouTube Video: Dr. Tony Attwood speaking about autism & the death of a parent:
IRCA online visual narratives for explaining death and associated routines:
Death: My Special Person Died: https://www.iidc.indiana.edu/styles/iidc/defiles/IRCA/MySpecialPersonDied.pdf
Death: When a Person Dies: https://www.iidc.indiana.edu/styles/iidc/defiles/IRCA/WhenAPersonDies.pdf
Death: When Someone Dies: https://www.iidc.indiana.edu/styles/iidc/defiles/IRCA/WhenSomeoneDies.pdf
Death: Going to a Visitation: https://www.iidc.indiana.edu/styles/iidc/defiles/IRCA/GoingToAVisitation.pdf
Death: Going to a Funeral: https://www.iidc.indiana.edu/styles/iidc/defiles/IRCA/GoingToAFuneral.pdf
Death: Going to the Cemetery: https://www.iidc.indiana.edu/styles/iidc/defiles/IRCA/GoingToTheCemetery.pdf
Books on explaining divorce to children:
These books explain the concepts in step by step concrete language and can be adapted for some teens and adults on the autism spectrum. Marge Heegaard’s book is in the format of a workbook.
Heegaard, M. (1996). When mom and dad separate: Children can learn to cope with grief from divorce. Minneapolis, MN: Woodland Press.
Menendez-Aponte, E. (1999). When mom and dad divorce: A kids resource. St. Meinrad, IN: Abbey Press.
Rogers, F. (1996). Let's talk about it: Divorce. New York: G.P. Putnum’s Sons.
Thomas, P. (1999). My family's changing: A first look at family break-up. New York: Barron’s Educational Series, Inc.
Resources for parents:
Teyber, E. (2001). Helping children cope with divorce.
Named one of the ten best parenting books of the year by Child magazine. It includes research about the impact of divorce on children of different ages and a detailed program for parents to support their children, themselves, and each family member through the transition.
Lansky, V. (1998). It's not your fault, Koko bear: A read-together book for parents and young children during divorce.
This book is for young children who are typically developing and is likely to be too abstract for most children on the autism spectrum. It does have some excellent tips and support for parents that can be used for all children and adapted as needed for children and teens on the autism spectrum.
Article: Goetze, G., Karuppaswamy, N., and Natrajan, R., with Myers-Walls, J. Helping children cope with divorce. Purdue University: https://www.extension.purdue.edu/providerparent/PDF%20Links/HelpingChildrenCopeDivorce.pdf
Online resources specific to explaining divorce to individuals with autism:
Article: Allred, S. Parent tips: Telling your kids you’re getting a divorce. Pathfinders for Autism: http://www.pathfindersforautism.org/articles/view/telling_your_kids_youre_getting_a_divorce
Article: Hutten, M. Helping Aspergers children through divorce. My Aspergers Child: http://www.myaspergerschild.com/2011/11/helping-aspergers-children-through.html
IRCA online visual narrative for explaining divorce:
Resources: General Loss/Grief
Gray, C.( 2004). The good grief! workbook: A presentation with Carol Gray. The Gray Center for Social Learning & Understanding. Retrieved February 2016 from http://michigandec.org/LinkClick.aspx?fileticket=crrfvdcN0n8%3D&tabid=967.
Attwood,T. (2004). Cognitive behaviour therapy for children and adults with Asperger's syndrome. Behaviour Change, 21(3), pp 147-161.
Forrester-Jones, R. V. E. and Broadhurst, S. (2007). Autism and loss. London: Jessica Kingsley Publishers.
Glass, J. C. (1991). Death, loss, and grief among middle school children: Implications for the school counselor. Elementary School Guidance & Counseling, 26(2), 139-148. Retrieved December 2015 from http://www.jstor.org/stable/42869004.
Gray, C. (2003). Gray’s guide to loss, learning & children with ASD. Jenison Autism Journal, 15(1), 1-44.
Nithyakala, K. and Myers-Walls, J.A. (2012). Explaining divorce to children. Provider-Parent Partnerships, Purdue University School of Consumer and Family Sciences, Department of Child Development and Family Studies. Retrieved December 2015 from: https://www.extension.purdue.edu/providerparent/Family-Child%20Relationships/ExplainDivorce.htm.
Wheeler, M. (2016). Supporting individuals on the autism spectrum coping with grief and loss through death or divorce. The Reporter, 20 (20). Retrieved from https://www.iidc.indiana.edu/pages/supporting-individuals-on-the-autism-spectrum-coping-with-grief-and-loss.