Bereavement and Autism: A Universal Experience with Unique Challenges

By Elizabeth Graham

This article originally appeared in the Spring 2013 issue of Autism Advocate, a publication of the Autism Society. It has recently been updated by the author to reflect the new prevalence statistics of autism and any other pertinent changes.

Bereavement and grief are universal experiences in all of our lives. The prevalence of autism is on the rise, 1 in 68, and this means more families with members on the spectrum and all families experience the death of a member. Not only is the prevalence of autism rising, so too are reports of death in the news. Recovering from grief is a process that is unique to each individual. Adelphi University Professor and autism advocate/educator Stephen M. Shore, Ed.D., has said, “If you meet one person with autism, you have met one person with autism.” The same is true with grief. According to Columbia University clinical psychology professor George A. Bonanno, Ph.D., many individuals are resilient to loss and trauma on their own and may not require grief counseling. For individuals with autism spectrum disorder, however, different factors may affect their grief recovery process and may need immediate and ongoing support; many with autism spectrum disorder have challenges with theory of mind and empathy, abstract thinking, executive functioning, and perseveration.

In December 2004 my mom, a musician and a retired Sergeant Major in the U.S. Army Band “Pershing’s Own”, died at the young age of 54 years from melanoma when I was 15 years old; a couple of years later I was diagnosed with Asperger’s Syndrome under the DSM-IV-TR. I went to a school that serves students in grades 1-12 with learning differences; the school has its own staff of occupational therapists, speech-language pathologists, and clinical psychologists; given the clinical staff the school has, I was surprised that I was diagnosed later, despite having gone to that school from first grade to graduation. Soon after my mom’s death I realized how many of us receive little accurate information on coping with grief, before a loss occurs. Looking back, grieving my mom’s death was a challenge especially before being formally diagnosed. My mom’s death and my later diagnosis have influenced me to take a special interest in the uniqueness of bereavement in individuals with autism spectrum disorder.

In college I majored in psychology and minored in counseling. I took Sociology of Death & Dying in my freshman year and Death & Grief Counseling in my junior year. My experience in the bereavement field has included volunteering at Hospice of Huntington in Huntington, West Virginia in Fall 2010 and with the Wendt Center for Loss and Healing, in Summer 2012, in my hometown District of Columbia. As of February 2014, I have been to 19 funerals/memorial services and 4 weddings. I hope to eventually pursue my Ph.D. in Clinical Psychology and specialize in the uniqueness of bereavement in individuals with autism spectrum disorder.

Combining my personal experience and academic knowledge, I have had a unique experience and experienced challenges that many individuals with autism spectrum disorder may go through when dealing with bereavement. I will first give an introduction of bereavement and then I will discuss the unique challenges.

There are many equally important events in our lives that our parents, family, and teachers help us prepare for. However, does everyone attend college? Does everyone know when they will have a wedding or if they will marry? Are all of us 100% certain that we will raise children with our future significant others? No. However, we can be absolutely certain of one thing in our lives, besides takes, and that is loss. At some point in our lives someone close to us will die, if not already.

The terms grief and bereavement are often used interchangeably. However, there is a difference. My favorite definition of grief is “the normal and natural reaction to loss of any kind and the conflicting feelings caused by the end of or change in a familiar pattern of behavior” (James & Friedman, 2009, p. 3). Grief does not always have to involve a death. Sometimes an individual has grief from a loss that others may not recognize as a loss to be grieved. Some examples include the loss of a pet either by death or by a runaway, late stage Alzheimer’s disease, or the death of a lover of the same gender/sex. This type of grief has been coined as disenfranchised grief by Kenneth Doka (Doka, 2008). Bereavement is the death of a loved one. In psychotherapy grief appears as themes in the lives of clients regularly and is often overlooked; the issue of grief appears far more often in therapy as an underlying cause or contributing factor to their troubles, rather than the presenting issue (Humphrey, 2009).

A support system is vital to grieving individuals. While the availability of a support network may not always be an issue, the quality of the support network is most important. It is not uncommon for members in the support network to invalidate the griever’s feelings (James & Friedman, 2009; Pomeroy & Garcia, 2009). At funerals, I have heard people say things such as, “She is no longer in pain,” “She is home with God,” or, “She wouldn’t want to see you cry.” I am reminded of what Russell Friedman, from the Grief Recovery Institute, said in a webinar: he asked why would you take away someone’s sadness any more than you would take away their joy? It often takes a month or two for reality to sink in. That is usually when grievers tend to reach out for support. According to James & Friedman (2009), “It is only natural and quite healthy for people who are caught in a grieving situation to seek solace from those around them. However, in rather short order it becomes abundantly clear to the griever that friends and associates are not of much help. Even though they are well meaning, they often say things that can seem inappropriate” (p. 39). The support system is vital to maintain through significant dates such as birth anniversaries, wedding anniversaries, death anniversaries, anniversary of a diagnosis, and holidays. One common challenge that I have seen in my experiences is that the support network is available shortly around the time leading up to the death or funeral, but not available in the future when the reality of the loss becomes clearer.

Grievers often go through a grief recovery process. There are different models for the grief process. Many are familiar with the stage theory of dying by psychiatrist Elisabeth Kübler-Ross. However many have misinterpreted her theory; her theory was for the individual who received news of a terminal illness (Kübler-Ross, 1969). There has been little to no empirical evidence to support her theory applied to post-death grief. Kübler-Ross (2005) wrote that her stage theory has “been very misunderstood…They are responses to loss that many people have but there is not a typical response to loss, as there is no typical loss” (p. 7). My favorite model of grief is the Task and Mediator Model by J. William Worden (2009); what affects the griever’s journey through the Tasks are the Mediators of Mourning. There are four Tasks and seven Mediators:

1. Accept the reality of the loss. Even if the death was anticipated, shortly after the death there is usually the feeling that the death has not happened, despite the acknowledgement of the death; this is numbness. In my personal experience, people are usually able to go through this first task with no difficulty; they soon notify a funeral home, family, friends, and other important people of the death. However, there are very rare times when a loved one will be in denial of the actual death, even in the presence of the deceased body. There is also denial of the meaning of the loss; an individual may react to the death by saying that the person who died was not important to her or him in some way. Sometimes the feeling of numbness is mistaken for denial. In high school, I was seeing a psychologist for issues not related to my mom’s death; he suggested that I was in denial of her death, despite me being very clear to him that my mom had died. As a result I had lost trust in him as a therapist. Numbness does not mean denial; if you are having a tooth pulled and Novocain has been administered, are you in denial that a dental procedure is being performed on you, despite you not feeling anything?
2. Process the pain of grief. Often this second task can be hindered by family and friends by unnecessarily distracting the griever from their emotions. This can influence the griever’s belief that they should not grieve or express their emotions at all. As I mentioned before, sometimes people can invalidate a griever’s feelings, which can impact a normal grieving process. At times there are those who believe that everyone should receive counseling or therapy. However, intervention can sometimes make the situation worse. According to Bonanno (2009), the one-size fits all approach to grief counseling has proven to be “notoriously ineffective but sometimes even harmful” and “psychological interventions do sometimes actually make people worse, and this usually happens when the intervention is unwarranted and interferes with a natural recovery process” (p. 105).
3. Adjust to a world without the deceased. Adjusting to the loss includes restructuring daily routines which is referred to as external adjustments. Another adjustment involves internal adjustments, which includes our perceptions and thoughts of life and reality as the result of the loss. For the first two months after my mom’s death, when I walked home from school I would shout, “Hello, mom!” I was not in denial of her death; it was just out of habit until I got used to not saying it when I got home from school. You will never miss your loved one any less, but establishing a new norm will come gradually.
4. Find an enduring connection with the deceased in the midst of embarking on a new life. This task is often the most challenging; many confuse this task with “letting go” giving up the relationship. The goal of this task is to emotionally relocate the deceased in life. Each time I hear classical music or attend the theater to see a live show or a musical, I always think of my mom and feel her spiritual presence with me.

As a group, family and friends may grieve the same individual. However, each person will be grieving the individual and unique relationship they had with the deceased person. It is important to keep in mind that even two close sisters, who both had a happy relationship with their dad, will be grieving two different relationships. It is also important to keep in mind that the death of a sibling is no less or more important than the death of a parent, friend, etc. Regardless of how well two people knew the deceased person, their unique relationship and their individual differences will affect their grief recovery process. How an individual will go through the Tasks of Mourning will be affected by the seven Mediators of Mourning.

1. Who the person who died was. The connection to the deceased person will affect how an individual will grieve. For example, the death of a parent will be grieved differently than the death of a spouse.
2. The nature of the attachment. What was the quality of the relationship to the deceased? Were there any unresolved conflicts with the deceased or regrets? The attachment style is also important. Unresolved issues with the deceased can rob the griever of having a chance at resolving the issue or repairing the relationship prior to the death, and this is often the case in unexpected deaths.
3. How the person died. Whether the death was anticipated or not can impact the griever. In cases of expected death, such as with a terminal illness, there may be the opportunity of gradually adapting and resolving unfinished business. Often in this situation, the family of the loved one will experience anticipatory grief. Anticipatory grief is the grief over losses that have occurred as a result of the illness as well as losses that will continue to occur (Pomeroy & Garcia, 2009). It is often asked whether anticipatory grief will help an individual with grief after the death; in my experience that question should be determined by the individual, since each loss is unique. If the deceased died suddenly or violently, the griever may be occupied with thoughts of whether or not the death could have been prevented. Sometimes the death can be violent to the extent that the body could not be recovered or was damaged beyond recognition. Even if the griever knows their loved one died, their sense of reality of the death can be affected in circumstances which the body was not able to be viewed; this can affect the griever’s ability to accomplish the first task of mourning: accept the reality of the loss. Another factor is if there is any stigma attached to the cause of death; death by suicide and AIDS are two examples of death that can be stigmatized.
4. Historical antecedents. Awareness of previous losses is important. Sometimes previous losses have not been adequately grieved and the current loss provides an opportunity for the griever to finish grieving the previous loss. When my maternal grandparents from Minnesota died in their 80’s, it was not a shock due to their age. It was emotionally difficult given my mom’s death just two to three years earlier; I was still in the early phases of grief. Knowing about previous losses can be helpful in supporting individuals in their grief process.
5. Personality variables. The person’s age and gender/sex contribute to the reaction to loss. In children, is the child at an age where they can comprehend death? Children will often express their feelings through behavior and playing (Walsh-Burke, 2006). It is not uncommon to see children playing with other children acting out the death. This is their way of comprehending and processing what happened. With gender/sex, there are two styles of grieving, instrumental and intuitive (Humphrey, 2009; Pomeroy & Garcia, 2009). Men tend to be instrumental grievers; they focus on activities and problem solving. Women tend to be intuitive grievers; they often may focus on emotions and their feelings. While these two grieving styles are dominant in men and women, respectively, there is usually a blending of the two in both.
6. Social variables. Emotional and social support is beneficial to the griever. Not only is the availability of a support network important, so too is the quality and satisfaction. Grievers with a strong support network are likely to have a lower chance of becoming clinically depressed (Worden, 2009). Individuals who are involved in more than one social role are likely to adjust to the loss more easily than those who are not; for example an active involvement in a religious community or congregation is helpful.
7. Concurrent Stresses. Often with a death there can be other life events that are stressful. When I was 14 years old, my paternal grandpa died in April 2004 in his 90’s from injuries sustained in a fall. My mom was in the early phases of Interferon treatment for her melanoma. Given my grandpa’s age and the pain he was experiencing in the hospital from the fall, his death was not a surprise, but seeing my mom go through cancer treatment added stress to the grief of my grandpa’s death.

Given the universality of bereavement and the rising prevalence of autism and the rise of reports of death in the news, it is important to address the uniqueness of bereavement in individuals with autism spectrum disorder. Bereavement is often a huge challenge for anyone. However for individuals on the spectrum, there may be additional challenges. I have come across only two peer-reviewed research articles, case studies, which addresses this: Berthier (1995) and Marston & Clarke (1999).

Dr. Barbara Becker-Cottrill, Ed.D., is the former Executive Director of the West Virginia Autism Training Center at Marshall University, and is a member of the Autism Society of America Panel of Professional Advisors. Dr. Becker-Cottrill is also a board certified behavior analyst. She says, “There is very little research in this area. Suggestions for helping individuals with autism spectrum disorder understand and cope with death are available. But empirical literature is scarce. Since all individuals with autism spectrum disorder will face bereavement in their lives, this is an area that deserves more research attention, particularly focused on strategies and interventions.”

Interacting with other bereft individuals may be a challenge. People mean well but tend to say things that are awkward and sometimes insensitive. However, given those on the spectrum may unintentionally come across as nonchalant and have challenges with theory of mind and empathy, this may be an area of concern; their intent may be the same but others may not see it the same. I know an individual, close to my age, with Asperger’s, whom I met in college. When discussing the death of someone we both knew he said, “Congratulations!” I felt he knew he was supposed to say something that acknowledged the death but did not realize that we do not say congratulations at a funeral or the in the context of the death of a loved one. When talking with the family and others people on the spectrum may have difficulty understanding that others are grieving differently. If what your loved one on the spectrum may say at a funeral is a concern, my advice before going to a funeral and talking with other mourners is to rehearse with them on what he or she might say when expressing condolences, either verbally or written, and to talk about how saying certain things to a griever (e.g. “she is home with god,” “I know how you feel,” or, “her death was a blessing”) may affect a mourner.

Interpreting what people say literally and being right-to-the-point are common with individuals with autism spectrum disorder. At funerals metaphors are often used to avoid saying, “dead” or “death”. The metaphor, “He is sleeping,” is generally not wise to use with young minds. However an adolescent or adult on the spectrum, depending on level of development, may interpret that metaphor literally and may be afraid to go to sleep at night. Another issue is when sometimes using the words, “dead” or “death” may be too harsh. Sometimes the bereft family may prefer the cause of death not be mentioned, due to reasons such as cultural views and/or stigma surrounding the cause of death.

Dealing with death and grief involves abstract thinking. Understanding where the deceased person may have gone is one challenge. “The concept of heaven or an afterlife is difficult to comprehend for many of us,” says Dr. Becker-Cottrill. “But for many people with autism spectrum disorder it is totally incomprehensible.” This may be a challenge with the first and fourth tasks of mourning, especially if the body was not viewed. Being able to appropriately emotionally relocate the deceased individual in your life may be a challenge; this is definitely an abstract process. Dr. Marc Ellison, Ed.D, LPC, is the Interim Executive Director of the West Virginia Autism Training Center at Marshall University. Dr. Ellison says, “Communicating abstract subjects such as feelings and fears is difficult.” He has supported individuals with autism in the face of bereavement as well as families grieving the death of a child with autism. Dr. Ellison goes on to say, “Finding tangible ways to routinely and regularly communicate these feelings and thoughts would likely be helpful.”

Another challenge is adapting to change. Since individuals on the spectrum like routine and doing things the same way, this can be a challenge with the third task of mourning: external adjustments. New routines have to be established, especially if the deceased person was part of the individual’s daily life. Adapting to new strategies is linked to difficulty with executive functioning. Dr. Ellison says, “Challenges related to executive functioning may pose significant barriers to overcoming grief.” In situations of anticipatory grief, Dr. Becker-Cottrill recommends adjusting early: “I would recommend that a consistent family member or person close to the family be selected to carry out the routines the terminally ill family member would typically do. Over time and the eventual death of the person, the child’s routine has been reset which could avert behavior challenges.”

Grievers often go through a phase of trying to make sense of the death or overcoming regrets of what should or should not have been done or said. With the tendency for those with autism spectrum disorder to perseverate on topics of their interest, matters surrounding the death can become their new interest. According to Tony Attwood (2007), “The child or adult may collect information on a topic that is causing emotional distress or confusion, as a means of understanding a feeling or situation” and that interest could rise to a level that is “no longer pleasurable or of intellectual psychological value” (p. 190). Dr. Becker-Cottrill mentions this perseveration can be due to challenges with abstract thinking. “Death is something that they would perseverate on,” she says. “Not having any concrete or acceptable answers as to why, what, and how this happened can be extremely difficult and difficult to let go of until a satisfactory answer comes.” When my mom died, obituaries became my interest. I would go online and sign obituary guest books of people who died in a similar way as my mom. I have no siblings so doing this helped me cope and feel less alone. If the new interest does not promote healing there is a chance that the griever could experience prolonged grief issues. My personal advice is to let the individual find her or his own way in coping with the death. But it is important to continually monitor how well they are adapting to the loss.

A social support network is essential in grief recovery. However, for individuals with autism spectrum disorder, this can be a challenge. “Developing a support system may be a challenge due to executive functioning difficulties and challenges with social communication,” says Dr. Ellison. “With individuals on the spectrum the expression of feelings associated with bereavement is difficult, or perhaps for some, even impossible. In those cases it’s vital to find some means through which they may express their grief.” Individuals with autism who are non-verbal may need to express their feelings through other means, such as art therapy or through online support groups. I personally found online support groups beneficial. Neurotypicals (individuals not diagnosed on the spectrum) might not understand how to interact with individuals with autism spectrum disorder. Dr. Ellison suggests that the individual on the spectrum may benefit from social skills and communication support and training to benefit the most from a bereavement support network. Another consideration with social support networks is the age of the individual. Since it is not uncommon for those with autism to have friends that are older or younger, it may be a challenge to seek support from others of the same age who have experienced similar loss; many grief support groups are grouped by age. While it is beneficial to be in a support group within the same age range, it is best to develop a support network that meets the individual’s needs. I found support groups helpful, but I was not comfortable with talking about my feelings to strangers face-to-face at that time. I found reading books about grief and textbooks on grief counseling and therapy very helpful. The book that I highly recommend on grief is The Grief Recovery Handbook by John W. James and Russell Friedman. They also have a great website with helpful articles at www.griefrecoverymethod.com and a blog on Psychology Today at www.psychologytoday.com/blog/broken-hearts. A book I recommend specifically for autism and grief is Finding Your own Way to Grieve by Karla Helbert, LPC.

I believe early discussion or exposure to bereavement in a concrete way could be beneficial and could assist the individual to use previously-learned knowledge when the time comes. Although my parents never did this, I would recommend talking to preteens about death in conjunction with talking about sex. It is important for parents to prepare children for major life events, but one life event we all know will occur is bereavement and death and yet many of us are ill-prepared; while not 100% of us will help procreate, 100% will definitely face end-of-life situations. The first funeral I went to was when I was 9 years old. My paternal grandma in Massachusetts died in December 1998 in a car accident while crossing a street. My parents told me what happened right after my dad received the phone call. They answered my questions in a concrete way. Criminal charges were not brought upon by the man who killed my grandma, so my dad helped grandpa file a wrongful death lawsuit. My dad let me sit in on the meetings with the attorney during our monthly visits to grandpa. My dad did not tell me anything or give me any details with what was happening unless I asked. My dad told me that when I would ask questions he would know I was ready to talk about it. This was a concrete way for me to understand the circumstances surrounding her death. Another concrete way to start a talk about loss is watching a bereavement-themed movie that is age-appropriate. Often talking about the death of strangers is easier. Regardless of how the topic of loss comes up, encourage questions but let the individual lead the discussion by the content and frequency of their questions. When young minds ask about death, it is usually a sign they are mature enough and ready to talk about it.

Bereavement and grief are inevitable and universal events in our lives. With the rise of autism, this increases the number of families with members on the spectrum and all families experience the death of a loved one. Each griever is just as unique as the relationship they had with the person who died. The goal of grief recovery is to establish a new norm and to emotionally relocate the deceased loved one. How an individual with go through the process will be affected by different mediators. How individuals on the spectrum will go through the tasks of grief will also be mediated by the individual’s empathy skills interacting with other grievers, ability to think abstractly, comprehension of the situation, available support network, and how much they might perseverate over the death. With the different challenges those with autism spectrum disorder may face, it is important to be actively involved in their support before, during, months, or even years after a major loss.

References

Attwood, T. (2007). The complete guide to Asperger’s syndrome. Philadelphia, PA: Jessica Kingsley Publishers.

Berthier, M. (1995). Hypomania following bereavement in Asperger’s syndrome: a case study. Neuropsychiatry, Neuropsychology, and Behavioral Neurology, 8(3), 222-228.

Bonanno, G.A. (2009). The other side of sadness: what the new science of bereavement tells us about life after loss. Philadelphia, PA: Basic Books.

Doka, K.J. (2008). “Disenfranchised grief in historical and cultural perspective.” In M.S. Stroebe, R.O. Hansson, H. Schut, and W. Stroebe. Handbook of bereavement research and practice: advances in theory and intervention. (pp. 223-240). Washington, DC: American Psychological Association.

Humphrey, K.M. (2009). Counseling strategies for loss and grief. Alexandria, VA: American Counseling Association.

James, J.W. & Friedman, R. (2009). The grief recovery handbook: the action program for moving beyond death, divorce and other losses. New York, NY: HarperCollins.

Kübler-Ross, E. (1969). On death and dying. New York, NY: Macmillan Publishing.

Kübler-Ross, E. & Kessler, D. (2005). On grief and grieving: finding the meaning of grief through the five stages of loss. New York, NY: Simon & Schuster.

Marston, G.M. & Clarke, D.J. (1999). Making contact – bereavement and Asperger’s syndrome. Irish Journal of Psychological Medicine, 16(1), 29-31.

Pomeroy, E.C. & Garcia, R.B. (2009). The grief assessment and intervention workbook: a strengths perspective. Belmont, CA: Brooks/Cole.

Walsh-Burke, K. (2009). Grief and loss: theories and skills for helping professionals. Boston, MA: Pearson Education.

Worden, J.W. (2009). Grief counseling and grief therapy: a handbook for the mental health practitioner. (Fourth edition). New York, NY: Springer Publishing.

Elizabeth Graham is an autism professional and woman with Asperger’s Syndrome. She is an Autism Waiver Service Coordinator at The Arc of Prince George’s County, based in Largo, Maryland. The Maryland’s Home and Community Based Services Waiver for Children with Autism Spectrum Disorder allows eligible children with Autism Spectrum Disorder to receive specific waiver services and certain Medicaid services to support them in their homes and communities. Prior to working at The Arc of Prince George’s County, she worked in direct support in Montgomery County, Maryland supporting adults with developmental/intellectual challenges who lived independently or in group homes; she also facilitated cooking and social skills classes in a program for young adults with autism who are transitioning into adulthood.

In May 2013, she received her B.A. in Psychology and a minor in Counseling from Marshall University in Huntington, West Virginia where she was a student in the College Program for Students with Autism Spectrum Disorder. During college, Elizabeth volunteered in hospice and at bereavement camps for families and children.

She has presented on the topic of bereavement and autism at the 13th Annual Marshall University College of Liberal Arts Conference and the 22nd Annual Tri-State Psychology Conference at the University of Charleston in April 2013.