BEREAVEMENT AND AUTISM                                                                     1Running head: BEREAVEMENT AND ...
BEREAVEMENT AND AUTISM                                                                          2                         ...
BEREAVEMENT AND AUTISM                                                                            3October 2010 and with t...
BEREAVEMENT AND AUTISM                                                                                4is to accept the re...
BEREAVEMENT AND AUTISM                                                                           5death of a spouse. A chi...
BEREAVEMENT AND AUTISM                                                                           6is another personality v...
BEREAVEMENT AND AUTISM                                                                           7the U.S. Army Band “Pers...
BEREAVEMENT AND AUTISM                                                                           8level. The diagnostic cr...
BEREAVEMENT AND AUTISM                                                                           9of as the ability of put...
BEREAVEMENT AND AUTISM                                                                            10       From my persona...
BEREAVEMENT AND AUTISM                                                                              11the new strategy. Al...
BEREAVEMENT AND AUTISM                                                                          12       more research att...
BEREAVEMENT AND AUTISM                                                                         13grieving family to tell t...
BEREAVEMENT AND AUTISM                                                                        14the face of bereavement as...
BEREAVEMENT AND AUTISM                                                                        15interact with individuals ...
BEREAVEMENT AND AUTISM                                                                          16or grieve the loss diffe...
BEREAVEMENT AND AUTISM                                                                           17expressing my condolenc...
BEREAVEMENT AND AUTISM                                                                       18                           ...
BEREAVEMENT AND AUTISM                                                                     19Rosenblatt, P.C. (2008). Grie...
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Bereavement and Autism: A Universal Event with Unique Challenges

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Bereavement and Autism: A Universal Event with Unique Challenges

  1. 1. BEREAVEMENT AND AUTISM 1Running head: BEREAVEMENT AND AUTISM Bereavement and Autism: A Universal Experience with Unique Challenges Brian A. Wong Marshall University Author NoteBrian A. Wong, Department of Psychology, Marshall University. Faculty Mentor, AssociateProfessor Keelon L. Hinton, Ph.D., Department of Psychology, Marshall University. Paper submission for Marshall University College of Liberal Arts Research & CreativityConference – presented Thursday, April 11, 2013. Correspondence concerning this paper should be addressed to Brian A. Wong,Department of Psychology, Marshall University email: brian.wong@live.marshall.edu or KeelonL. Hinton, Ph.D., Department of Psychology, Marshall University email: k.hinton@marshall.edu
  2. 2. BEREAVEMENT AND AUTISM 2 Abstract Bereavement is a universal, but often misunderstood, experience. The rate of autism being diagnosed is on the rise. Grief from bereavement can be very difficult for any person. However, with the unique challenges many on the autism spectrum may face, the grief recovery process may be different or more of a challenge for these individuals than their neurotypical counterparts. The author combines his personal experience with bereavement and being diagnosed with Asperger’s Syndrome with his research and volunteer experiences with grieving individuals to predict the unique challenges that people on the spectrum may experience in the face of bereavement.Introduction Grief from bereavement is an inevitable and universal experience. The prevalence ofautism has risen to 1 in 88 children, according to the Centers for Disease Control and Prevention(CDC, 2012). Recovering from grief from bereavement is a process that is unique to eachindividual and is affected by different mediators. For individuals on the autism spectrum,however, other mediators may affect their grief recovery process. Individuals with autism oftenhave challenges with theory of mind and empathy, special interests, abstract thinking and literalthinking, and other cognitive challenges; these may be additional mediators for the grief recoveryprocess for individuals on the spectrum. My mom died at the age of 54 when I was a teenagerand a couple of years later I was diagnosed with Asperger’s Syndrome. My academic background in grief consists of taking Sociology of Death and Dying inSpring 2010 and Grief Counseling in Fall 2011. My practical volunteer experience in the fieldhas been with Hospice of Huntington Camp Good Grief Family Retreat, in Huntington, WV, in
  3. 3. BEREAVEMENT AND AUTISM 3October 2010 and with the Wendt Center for Loss and Healing Camp Forget-Me-Not, inWashington, DC, in June 2012. Building upon my experiences I provide my knowledge and mypredictions on the unique challenges of individuals on the spectrum in the face of bereavement. Iwill first give a brief introduction of bereavement and autism; then I will discuss my predictionson the unique aspects of grief in individuals on the autism spectrum.Bereavement and Grief There are many equally important events in our lives that our parents and teachers help usprepare for. However, does everyone attend college? Does everyone know when they will have awedding or if they will marry? Are all of us 100% certain that we will raise children with ourfuture partners or spouses? The answer is no. However, we can be absolutely certain of one eventin our lives: grief. Grief and death are universal experiences. At some point in our lives all of uswill lose someone close to us to a death, if not already. The terms grief and bereavement are often used interchangeably. However, there is adifference. Grief can be defined as “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) and does not always have to involve a death. Bereavement is the death of aloved one. Grief appears as familiar themes in the lives of psychotherapy clients, occurringregularly, and often professionals overlook the presence of grief and loss; the issue of griefappears far more often in therapy as an underlying cause or contributing factor to their troubles,rather than the presenting issue (Humphrey, 2009, p. 9). Grievers often go through a grief recovery process, known as the Tasks of Mourning;what affects a griever’s journey through the tasks are the Mediators of Mourning (Worden,2009). There are four Tasks of Mourning (Worden, 2009, pp. 35-54). The first task of mourning
  4. 4. BEREAVEMENT AND AUTISM 4is to accept the reality of the loss. Even if the death was anticipated, there is usually a feeling thatthe death has not happened. In my personal experience, people are usually able to go through thisfirst task with no difficulty; they soon notify the funeral home, family, and friends of the death.However, there are rare occurrences when a loved one will deny the actual death. Sometimes,denial is mistaken for the feeling of numbness (James & Friedman, 2009). The second task is toprocess the pain of grief. Often this second task can be hindered by family and friends bydistracting the griever from their emotions. This can influence the griever’s belief that theyshould not grieve or express their emotions. The third task of mourning is to adjust to a worldwithout the deceased. Adjusting to the loss includes a) external adjustments: adapting to dailylife without the deceased, such as routines and adopting new roles; b) internal adjustments: senseof self and self-efficacy; and c) spiritual adjustments: assumptive world and sense of direction inlife. The fourth task of mourning is to find an enduring connection with the deceased in the midstof embarking on a new life. This task is often most challenging; many confuse this task withletting go or giving up the relationship. The real goal of this task is to appropriately emotionallyrelocate the deceased in your life. When we go to a funeral, we as a group are grieving and mourning for the person whodied. As an individual, we will grieve and mourn for the relationship we had with the deceased.There are mediators that will affect how we individually will grieve a loss. Regardless of howwell two people knew the deceased person, their unique relationship and their individualdifferences will affect their grief recovery process going through the tasks of mourning. Wordenhas developed seven Mediators of Mourning (Worden, 2009, pp. 57-77):Who the person who died was The connection to the deceased person will affect how onegrieves. For example, the sudden death of a parent will be grieved differently than the anticipated
  5. 5. BEREAVEMENT AND AUTISM 5death of a spouse. A child who is one age and the sibling who is older will grieve the death oftheir dad differently. A business partner will grieve differently than the immediately family.The nature of the attachment What was the quality of the relationship to the deceased? Werethere any unresolved conflicts with the deceased? The attachment style is important in regards tothe intensity of grief. Unresolved issues with the deceased person can rob the person of resolvingthe issue or even repairing the relationship.How the Person Died Whether the death was anticipated or not can impact the griever’s grief. Ifthe deceased died suddenly or violently, it can challenge one’s sense of self-efficacy andpreoccupy the griever with thoughts of whether or not the death could have been prevented.Sometimes the death was violent to the extent that the body could not be recovered or damagedbeyond recognition; this can affect the griever’s ability to accomplish the first task of mourning,accepting the reality of the loss. Even if the griever knows their loved one died, their sense ofreality of the death can be affected in such circumstances.Historical Antecedents Previous losses also play a part in the individual’s grief. Sometimesprevious losses have not been adequately grieved or mourned and the recent loss is anopportunity for the griever to finish grieving the previous loss. When my maternal grandparentsdied, it was not a shock, due to their age. It was emotionally difficult given my mom’s death acouple years earlier. I was still in the early phases of grief from my mom’s death.Personality Variables The person’s age and gender contribute significantly to the reaction toloss. Is the child at an age when they are usually able to comprehend death? Children cope withloss differently than adults do. Children will often express their feelings through behavior andplay (Walsh-Burke, 2006). It not uncommon to see children playing with other children actingout the death. This is their way of comprehending and processing what happened. Coping styles
  6. 6. BEREAVEMENT AND AUTISM 6is another personality variable. Some use problem solving, active emotional coping (e.g. humor),or avoidant emotional coping (e.g. distractions).Social Variables Emotional and social support is beneficial to the griever. Not only is theavailability of such a network is important, so is the quality and satisfaction of the network. Onecommon challenge I have seen in my experiences is that the support network is around shortlyaround the time of death, but not available in the future when the reality of the loss becomesclearer. Grievers with a strong social support network are likely to have a lower chance ofbecoming clinically depressed (Worden, 2009, p. 74). Individuals who are involved in more thanone social role are likely to adjust to the loss more easily than those who are not. Activeinvolvement in some type of community also helps. Another social variable is culturaldifferences. Worden writes that each of us is a member to various social subcultures that provideus with “guidelines and rituals for behavior” (p. 74). The cultural expectations of a griever arealso important to take into consideration. Their culture may encourage different displays ofemotion or may not allow such emotions to be openly expressed. The griever’s culture is a veryimportant factor to consider in the grief recovery process. Rosenblatt (2008) points out that often we are oblivious to other cultures when it comesto bereavement: Because we are embedded in the realities of the culture we know best, we may well be oblivious to the cultural saturation of our knowledge and the many ways that such saturation makes us ill fit to understand, or even pay attention to, the grieving of people from cultures different from our own (p. 207).Concurrent Stresses Often when a death happens there are other losses that occur, secondarylosses. With my mom’s death came the loss of music in the house. My mom was a musician in
  7. 7. BEREAVEMENT AND AUTISM 7the U.S. Army Band “Pershing’s Own” and was a freelance piano teacher. There are also somesecondary losses that appear later after the loss, not always right away, and are not alwayspredictable.Autism Today, we are more likely to interact with people on the autism spectrum. The rate ofautism being diagnosed has risen. Many colleges and universities now have programs to supportstudents on the spectrum (Hood, 2011; Jaslow, 2011) and this raises the likelihood of theseindividuals interacting with neurotypicals. (Neurotypical is a term used within the autismcommunity referring to an individual who is not on the spectrum.) With the diagnosis rate risingand the support for individuals with autism becoming more available, it is important forindividuals to become familiar with autism. Autism Spectrum Disorders (ASD) are a spectrum of neurodevelopment conditionscharacterized by difficulty with social interaction, different levels of social impairment, and byrepetitive and restricted behaviors (National Institutes of Health, 2013). Classic autism, orAutistic Disorder, is the severe form of autism whereas Asperger’s Syndrome is not as severe. According to the American Psychiatric Association (2000), Autistic Disorder andAsperger’s Syndrome are classified under Pervasive Development Disorders (PDD) in the DSM-IV-TR. PDDs are marked by pervasive and severe impairment in areas of development thatinclude communication skills, the presence of stereotyped behavior, interests, or activities, andreciprocal social interaction skills. Autistic Disorder is characterized by development of social interaction that is abnormalor impaired along with a range of activity and interests that is markedly restricted. This disordermanifests itself differently depending on the individual’s chronological age and developmental
  8. 8. BEREAVEMENT AND AUTISM 8level. The diagnostic criteria relating to impairment in social interaction in Autistic Disordersuggests that those with the condition may develop peer relationships that are not consistent withtheir developmental level; an individual may seek friends who are younger or older. Impairmentsin communication may result in delay or complete lack of the development of spoken languageand with individuals with adequate speech ability, there will be difficulty with initiating andmaintaining conversations. With patterns of behavior, the individual may develop apreoccupation with restricted or stereotyped patterns of interest that may seem abnormal in focusor intensity. Another characteristic relating to patterns of behavior is the “apparently inflexibleadherence to specific, nonfunctional routines or rituals” (American Psychiatric Association,2000, p. 75). There is difficulty in using nonverbal behavior such as facial expressions, eye-to-eye gazing, and gestures to regulate social interaction. With Asperger’s Syndrome, there is difficulty in socially interacting with others anddisplaying patterns of activities, behaviors, and interests that are repetitive and restrictive innature. Like Autistic Disorder, those with Asperger’s also have difficulty with the use of andrecognizing nonverbal behaviors and developing peer relationships that are consistent with theirdevelopmental level. While several traits of Autistic Disorder and Asperger’s Syndrome aresimilar, with Asperger’s “there are no clinically significant delays or deviance in languageacquisition, although more subtle aspects of social communication may be affected” (AmericanPsychiatric Association, 2000, p. 80).Theory of Mind A common issue with those on the autism spectrum is theory of mind. According toAttwood (2007), Theory of Mind is the ability to notice and comprehend other people’s beliefs,desires, and intentions in addition to predict their future actions. Theory of Mind can be thought
  9. 9. BEREAVEMENT AND AUTISM 9of as the ability of putting yourself in the other person’s shoes or as empathy. Attwood writesthat the individual may “not recognize or understand the cues that indicate the thoughts orfeelings of the other person at a level expected for someone of that age” (p. 112). According to Attwood, it is not uncommon for adolescents with Asperger’s Syndrome tofocus less on social aspects and more on physical aspects. When describing a situation,individuals may use less Theory of Mind terms and produce “fewer and more simplisticpersonality attributions” (p. 113). I notice I usually tend to be able to remember what peoplewere wearing and where I was more than the emotional aspects. An issue with regards to thegrief process is empathy. Individuals with Asperger’s do not necessarily lack empathy; theirability to empathize may be immature or impaired.Literal Thinking With a lack of Theory of Mind skills, an individual on the spectrum has a tendency tointerpret what others say literally. For example, a young child was writing an essay forhomework and at the end of the essay he drew pictures; upon his mom asking him why he drewpictures, he said that the teacher told him to “draw his own conclusions” (Attwood, 2007, p.115). I remember I used to have a difficult time understanding figures of speech and sarcasm. It is not uncommon for one on the spectrum to appear to “break the social rules” and havedifficulty recognizing subtle cues from others (Attwood, 2007, p. 116). Like me, many on thespectrum do not enjoy, or are not skilled at, small talk or with subtleties and are very right-to-the-point. Due to difficulty with eye contact, this contributes to the individual’s difficulty withrecognizing the mood of the other person and recognizing nonverbal language. This can makethe individual appear to others as disrespectful or rude; however, it is important to note thatusually this is not intentional.
  10. 10. BEREAVEMENT AND AUTISM 10 From my personal experience, it is common for those on the spectrum to be very direct,very right-to-the-point. This can make these individuals very honest. These individuals may notknow when to tell a white lie. Looking back to my pre-teen years, I remember when I would paymore attention to being very honest than thinking about the effect that my level of honesty hadon other people. Even though I am aware of nonverbal communication, I usually prefer right-to-the-point conversations and communicating online with instant messaging; that way I do notalways need to worry about body language or tone. I am still a very right-to-the-point person, butI have learned how to be direct but polite at the same time.Specific Interests People with autism are known for having a limited and specific area of interest. Often thisinterest can lead to great expertise in a specific area. Individuals often accumulate facts about thespecific topic and this area of interest can become their dominant topic of conversation(Attwood, 2007). When I graduated from high school, I received a pen made by a famousEuropean fountain pen company, whose original value started at or around $450. I really likedthe pen and I researched the company and the pens on their website and would be able to identifyall the pens and their year released. I got so interested in pens made by this company that I wouldtalk about it each time I would see someone using a pen and ask why they were not using thesepens, being completely oblivious to the fact that they could not afford one.Cognitive Challenges Some cognitive challenges in individuals on the autism spectrum include executivefunctioning (Attwood, 2007). Individuals on the spectrum have trouble recognizing newstrategies or the need to adopt new strategies even when they recognize their current one is notproving effective. When presented with a new strategy the individual may be hesitant to adopt
  11. 11. BEREAVEMENT AND AUTISM 11the new strategy. Also, the individual may have difficulty learning from mistakes. Difficulty withself-reflection and self-monitoring is another common cognitive challenge. Thinking aloud iscommon, as these individuals think visually, in pictures, and can facilitate thinking and problemsolving aloud. Individuals on the spectrum have difficulty with internalizing ideas; they havedifficulty thinking about things they cannot see. Abstract thinking can be difficult as a result. Many on the spectrum, including myself, function well on a routine. Depending on theindividual any changes in the routine, large or small, can cause frustration in the person. Eachindividual will handle such a situation differently.Bereavement and Autism Given the universality of bereavement and the rise in rate of autism being diagnosed, it isimportant to address the uniqueness of bereavement in this population. Bereavement is achallenge for anyone. However for individuals on the spectrum, there may be additionalchallenges. Addressing this area of bereavement and autism is very important. I personally havefound very little empirical research on this unique topic. Barbara Becker-Cottrill, Ed.D.,Executive Director of the West Virginia Autism Training Center at Marshall University, is aBoard Certified Behavior Analyst. She received her Doctor of Education degree from TeachersCollege, Columbia University. She has been working at the Autism Training Center for the pasttwenty-three years. She agrees there needs to be more attention in this area of bereavement andautism. Becker-Cottrill says: There is very little research in this area. Suggestions for helping individuals with ASDs understand and cope with death are available. But empirical literature is scarce. Since all individuals with ASDs will face bereavement in their lives, this is an area that deserves
  12. 12. BEREAVEMENT AND AUTISM 12 more research attention, particularly focused on strategies and interventions. (Becker -Cottrill, personal correspondence, Wednesday, March 13, 2013). With difficulty with Theory of Mind, individuals on the spectrum may have a difficulttime connecting with others and with being able to imagine what others may be feeling. This canpose a challenge in grieving, long term. They may not understand why others are not feeling theway they are about the death. These individuals may not be aware that people will react to theloss differently based on their relation to the deceased; while this is common even withneurotypicals, it may be different how those on the spectrum come to realize this. When mymom died, I wondered why her piano students were not grieving the way I was. Eventually, Irealized that their relationship with my mom was different. For many of my mom’s pianostudents, the relationship was nothing more than piano student and piano teacher. With individuals on the spectrum having difficulty in understanding the appropriatenessof what they say, or appearing as rude, and with Theory of Mind can pose a challenge wheninteracting with other grievers. One issue I predict is expressing condolences appropriately to thebereft family. I have been to seventeen funerals and memorial services to date and I have heardmy fair share of comments that do not benefit the grieving individual. While even neurotypicalsmay say things at funerals that can come across as awkward, the individual on the spectrum mayhave more difficulty in understanding how what they may say can be inappropriate. I predict a situation for an individual who may have difficulty in understanding thesituation at a funeral of someone who died of cancer: the children of the deceased are worriedthat they may get cancer, since there is a history of cancer in the family. The individual on thespectrum with knowledge of cancer statistics may say something such as, “Don’t worry. Thechances for you getting cancer are…” In general, people at funerals tend to say things to the
  13. 13. BEREAVEMENT AND AUTISM 13grieving family to tell them not to feel sad, such as, “God called him home,” “She is in a betterplace,” or even, “She is no longer suffering.” Becker-Cottrill says that these individuals “mayjust not understand the social sensitivity of how others may be dealing with grief.” Another issue may be in the situation of a grief support group where the individualbelieves that her or his loss is greater and more important than others in the group. I have seenthis in various support groups I have been in and observed. This is common with neurotypicals ingrief support groups. However, for those on the spectrum, it may be more difficult for them torealize this. Interpreting what people say literally and being right-to-the-point are common with theseindividuals. At funerals metaphors are often used to avoid saying, “dead” or “death.” Themetaphor, “He is sleeping,” is generally not a good metaphor to use with young children.However for an adolescent or an adult on the spectrum, depending on their cognitivedevelopment, they may interpret that metaphor literally and be afraid to sleep that night. Anotherissue is when using the words dead” or “death” may be too harsh or if the bereft family does notlike the cause of death being mentioned. Dealing with death and grief involves abstract thinking. The fourth task of mourning is tofind an enduring connection with the deceased in the midst of embarking on a new life. Beingable to appropriately emotionally relocate the deceased individual in your life may be achallenge; this is definitely an abstract process. “Communicating abstract subjects [such as]feelings and fears is difficult,” says Marc Ellison. “Finding tangible ways to routinely andregularly communicate these feelings and thoughts would likely be helpful.” Marc Ellison is theAssociate Director of Training at the West Virginia Autism Training Center (personalcorrespondence Wednesday, March 6, 2013). Ellison has supported individuals with autism in
  14. 14. BEREAVEMENT AND AUTISM 14the face of bereavement as well as families grieving the loss of a child with autism. He receivedhis M.A. in Counseling from Marshall University and is a Licensed Professional Counselor andan Approved Licensed Professional Supervisor in the state of West Virginia. Since 1985 he hasbeen working with individuals on the autism spectrum, the same year when West Virginia begandeinstitutionalizing. Ellison was involved with the building of an infrastructure of community-based services and with helping individuals develop social networks. Another cognitive challenge includes adapting new strategies. Since individuals on thespectrum like routine and doing things the same way, this can be a challenge with the third taskof mourning with externally adjusting to life without the deceased. New routines have to beestablished, especially if the deceased person was part of the individual’s daily life or was insome way dependent on the deceased person. Adapting new strategies is linked to difficulty withexecutive functioning. Executive functioning is often impaired, which makes it difficult for theindividual in areas such as planning, controlling, and regulating emotions and impulses,according to Ellison. “Challenges related to executive functioning may pose significant barriersto overcoming grief.” A social support network is essential in grief recovery. However, for individuals on thespectrum this can be a challenge. “Developing a support system may be a challenge due toexecutive functioning difficulties and challenges to social communication,” says Ellison. “Withfolks diagnosed with an autism spectrum disorder the expression of feelings associated withbereavement is difficult or, perhaps for some, even impossible. In those cases it’s vital to findsome means through which they may express their grief.” Individuals with autism who arenonverbal, or lack the ability to speak, may need to express their feelings through other means,such as art therapy. Neurotypicals, according to Ellison, might not fully understand how to
  15. 15. BEREAVEMENT AND AUTISM 15interact with individuals with autism. He suggests that these individuals may benefit from socialskills and communication support and training to benefit the most from a bereavement supportnetwork. Another consideration with social support networks is the age of the individuals. Sinceit is not uncommon for those with autism to have friends that are either older or younger, it maybe a challenge to seek support from others of the same age who have experienced a similar loss. I can say from experience that after the death of a loved one, there can be constantchanges in routines and a lot of uncertainties. For individuals on the spectrum who depend oncertainty and routines to a very high extent, this can cause great anxiety and stress. Whattherapists often use with individuals on the autism spectrum to learn social communication skillsare social stories. There are times when early intervention is not helpful and times when it ishelpful. Early intervention can often disrupt a healthy grieving process and be detrimental.Columbia University psychology Professor George Bonanno has researched bereavementextensively. According to Bonanno (2009) “psychological interventions do sometimes actuallymake people worse, usually when the intervention is unwarranted and interferes with a naturalrecovery process” (p. 105). However, with those on the autism spectrum being stressed over theunknown, social stories could be an appropriate early intervention. “Using social stories themedon bereavement and grief in a progressive manner to help reduce anxiety, stress, and grief wouldlikely be an effective intervention,” Ellison says. With respects to areas of specific interest, this could be an issue for the griever withautism. Those on the spectrum may not always grieve the death in the same manner as others; thecause of the death may become their area of interest. According to Attwood (2007), “The childor adult may collect information on a topic that is causing emotional distress or confusion, as ameans of understanding a feeling or situation” (p. 190). Individuals on the spectrum may mourn
  16. 16. BEREAVEMENT AND AUTISM 16or grieve the loss differently and may cope with the loss by learning more about the cause ofdeath. While this area of specific interest can have its benefits, this can cause a problem. Theinterest could rise to an intense level that it is “no longer pleasurable or of intellectual orpsychological value” (Attwood, 190, p. 190). One issue in the bereavement field is abnormal grief, or more commonly referred to ascomplicated grief, the difficulty with grief recovery. With complicated mourning, theindividual’s grief reaction can be chronic, delayed, exaggerated, or masked (Walsh-Burke, 2006;Worden, 2009). Individuals on the spectrum have a tendency to perseverate as well as take on aspecific area of interest. It is my prediction that this unique population is likely to experiencechronic grief. Chronic grief is when the griever has feelings of unfinished grief or continues tohave the same reactions years later that one normally experiences shortly after the death(Worden, 2009). These individuals are likely to perseverate over the death, unfinished business,or regrets. “Clearly this is a problem,” says Ellison. “It’s one of the reasons that mental healthcounselors must be more aware of how best to provide therapy to this unique population.”However, one important question to consider with bereft individuals on the spectrum is whethertheir perseveration or preoccupation with matters relating to the death is a normal way for themto cope or whether it is a premorbid sign for complicated grief. Sometimes their strategies fordoing things may not be effective and they continue to use that ineffective strategy, despite beingaware of the ineffectiveness. When my mom died, I became very interested in funeral arrangements and obituaries. Iwould go on the internet and read about pre-planning funerals and read obituaries. I would evensign my condolences on online obituary guest books of strangers who died under similarcircumstances as my mom. Some in my support network saw this as a concern. For me, I felt that
  17. 17. BEREAVEMENT AND AUTISM 17expressing my condolences to others who were in a similar situation helped me cope. I felt that Iwas the only one who was experiencing what I was going through and reaching out to others, byreading their obituaries, helped me feel less alone in my grief. It is important to consider whetherthe griever is coping in a way that helps them or whether their way of coping may lead to furtherissues with grief in the future. With talking about my feelings, I was not comfortable doing that. Iinstead researched about bereavement and read textbooks on grief counseling at a universitylibrary nearby.Conclusion Bereavement and grief are universal events and very often present themselves as theunderlying issues more so than the presenting issues in psychotherapy. The rate of autism beingdiagnosed has risen, raising the likelihood we will be interacting with these individuals. Whilethe grief recovery process and tasks of mourning may be similar for all, the mediators that affectus individually and how we will go through the mourning process are unique to the individualand her or his relationship with the deceased. Those on the autism spectrum face challenges withtheory of mind, executive functioning, and other cognitive challenges. With the difficulty toexpress their emotions, these individuals are likely to face social challenges with those aroundthem following a loss. With issues relating to executive functioning and a tendency toperseverate, this can make them a likely candidate for a form of complicated grief. The attentionto this unique population in the face of grief is very much needed. As uncomfortable as it may beto discuss such topics as death and grief when not in a bereavement situation, it is important thatwe do so with individuals on the autism spectrum to better equip them with the necessarystrategies for them to be able to cope with a loss that we know will eventually come.
  18. 18. BEREAVEMENT AND AUTISM 18 ReferencesAmerican Psychiatric Association. (2000). Diagnostic and Statistical Manual of Mental Disorders. (4th ed., text rev.). Washington, DC: Author.Attwood, T. (2007). The complete guide to Asperger’s Syndrome. (First edition). Philadelphia, PA: Jessica Kingsley Publishers.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.Centers for Disease Control and Prevention (2012). Prevalence of Autism Spectrum Disorders Autism and Developmental Disabilities Monitoring Network, 14 Sites, United States, 2008. Morbidity and Mortality Weekly Report 61(3). Retrieved from cdc.gov/mmwr/pdf/ss/ss6103.pdfHood, G. (2011, Wednesday April 13). “Autistic kids learn to survive, and thrive, in college. National Public Radio. npr.org/2011/04/13/135345982/colleges-address-autistic-students-struggles.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: HarperCollinsJaslow, R. (2011, Monday May 9). “Autism spectrum students get welcome at more colleges.” CBS News. cbsnews.com/8301-504763_162-20061046-10391704.htmlNational Institutes of Health. (2013, Monday February 4). Autism Fact Sheet. Retrieved from ninds.nih.gov/disorders/autism/detail_autism.htm
  19. 19. BEREAVEMENT AND AUTISM 19Rosenblatt, P.C. (2008). Grief across cultures: a review and research agenda. In M.S. Stroebe, R.O. Hansson, H. Schut, & W. Stroebe (Eds.), Handbook of bereavement research and practice: advances in theory and intervention (pp. 207-222). Washington, DC: American Psychological Association.Walsh-Burke, K. (2006). Grief and loss: theories and skills for helping professionals. Boston, MA: Pearson EducationWorden, J.W. (2009). Grief counseling and grief therapy: a handbook for the mental health practitioner. (Fourth edition). New York, NY: Springer Publishing.

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