Welcome to Your Central Florida Autism Resource With hundreds of member families , ASGO is one of the largest and oldest local Autism organization in the state of Florida. April is Autism Awareness Month. This population may face additional challenges related to comprehension, communication, difficulty understanding abstract language, an insistence on sameness, and a greater likelihood of anxiety and depression—all of which may be exacerbated during this stressful period. Suggested Readings. When a pet dies. Heegaard, M. (1996). 3. The list of emotional reactions below is very typical of all people. About 75% of adults with an intellectual or developmental disability live with family members and most do not receive formal services or supports. BehavioralIt 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. Jenison Autism Journal, 15(1), 1-44. These books explain the concepts in step by step concrete language and can be adapted for some teens and adults on the autism spectrum. Menendez-Aponte, E. (1999). Gray’s guide to loss, learning & children with ASD. Caregivers may want to start with a strategy they have used in the past, or perhaps find a tool to address the issue that is creating the most immediate stress. CBT is only offered by trained therapists and is based on the theory that how people think, feel, and behave is connected. Loss and grief, death, and divorce are difficult subjects to discuss. 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. Very adaptable and appropriate for adults, also. Be there to listen. 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. If appropriate, death can be explained as the person is no longer able to move, talk, or breathe, etc. Rogers, F. (1988). Includes various grief resources at the end. Donations are tax deductible to the extent permitted by law. Narratives should explain what will change, and how and what will stay the same. 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. 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. Retrieved  December 2015 from http://www.jstor.org/stable/42869004. (2004). Accessibility | Privacy Notice All reactions should be seen as valid. 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. 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. Attwood,T. The symptoms and characteristics of autism can present themselves in a wide variety of combinations, from mild to severe. Whether a person is on the autism spectrum or not, guilt is a common reaction when someone close dies and/or a divorce happens. Two workbooks specifically for persons on the autism spectrum: Faherty, C. (2008). There is a wealth of information available about Social Stories™ developed by Carol Gray. Media Watch. Individuals on the autism spectrum are no exception. 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. Autism; COVID-19: supporting adults with learning disabilities and autistic adults; Department of Health & Social Care. 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. St. Meinrad, IN: Abbey Press. Helping children cope with divorce. Provider-Parent Partnerships, Purdue University School of Consumer and Family Sciences, Department of Child Development and Family Studies. She shares some very helpful and interesting insights:http://www.thinkingautismguide.com/2012/08/autistic-grief-is-not-like-neurotypical.htmlArticle:  Death and grieving (published by Pathfinders for Autism).Good article with tips for parents to support their child with autism dealing with a death. Resources for Adults with Autism for Uncertain Times Full Packet. 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. People with an autism spectrum disorder often have a hard time expressing their feelings. People with ASD can also present with restricted and/or repetitive patterns of behavior, interests or activities. • 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. There are no set customs and routines for sharing grief with others and divorce can also divide families. It is vital that, when mental health problems arise, mental health professionals and providers are able to give high quality support that works for people on the autism spectrum. IU Bloomington, Indiana Institute on Disability and Community. 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. This content is adapted from Hume, Regan, Megronigle, & Rhinehalt, 2016. Even if a death or divorce is anticipated, plans for support are most often decided after the event happens. Article: Goetze, G., Karuppaswamy, N., and Natrajan, R., with Myers-Walls, J. Gray’s guide to loss, learning and children with ASD. A book for younger children and focused on pets, but the content and concepts covered are helpful and can be adapted for other situations. 7 Strategies to Support Individuals with ASD through Uncertain Times, Hume, K., Waters, V., Sam, A., Steinbrenner, J., Perkins, Y., Dees, B., Tomaszewski, B., Rentschler, L., Szendrey, S., McIntyre, N., White, M., Nowell, S., & Odom, S. (2020). Indiana University Bloomington 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. The two workbooks are both written for individuals on the autism spectrum and provide additional information which is helpful for family members and professionals. St. Meinrad, IN: Abbey Press. This guideline was previously called autism: recognition, referral, diagnosis and management of adults on the autism spectrum. 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. THANK YOU to our Partner, Supporting Star, Champion and Benefactor Level Sponsors. Be patient and understanding and continue to support individuals, as long as needed, after the loss. They may feel anxious or fearful of what caused the divorce or death. Adult with autism explains how she dealt with the death of her father when she was 47 years old. Often, however, it is not possible to develop a plan of support in advance when a loss is sudden. Visit the NPDC website for more information. Guidance Coronavirus (COVID-19): guidance for care staff supporting adults … Thomas, P. (1999). Sometimes the emotion felt, in this case grief, is displayed in a manner which is the opposite of the emotion they are feeling. Sibilings of Autism is a 501(c)(3) registered charity. Gray, C. (2003). Pathfinders for Autism:  https://pathfindersforautism.org/articles/home/parent-tips-telling-your-kids-youre-getting-a-divorce/, Article: Hutten, M. Helping Aspergers children through divorce. New York: Barron’s Educational Series, Inc. Teyber, E. (2001). Sad isn’t bad: A good grief guidebook for kids dealing with loss. Supporting Individuals with Autism Spectrum Disorders: Quality Employment Practices: Brief developed by the Institute for Community Inclusion at the University of Massachusetts-Boston that shares best practices for fostering employment access for adults on the autism spectrum. If possible, involve the person with ASD in the development of the new routine(s). In reality, not telling them very likely will make them more anxious and confused. Behaviour Change, 21(3), pp 147-161. All children and young adults require support from caregivers during times of stress and uncertainty, such as those we are facing now with the spread of the coronavirus (COVID-19). Behavioral-Issues-and-the-Use-of-Social-Stories, http://www.thinkingautismguide.com/2012/08/autistic-grief-is-not-like-neurotypical.html, https://pathfindersforautism.org/articles/home/parent-tips-death-and-grieving/, https://autismnow.org/blog/bereavement-and-autism-a-universal-experience-with-unique-challenges/, http://www.autismsupportnetwork.com/news/video-dr-tony-attwood-autism-death-parent-38490234, https://www.extension.purdue.edu/providerparent/PDF%20Links/HelpingChildrenCopeDivorce.pdf, https://pathfindersforautism.org/articles/home/parent-tips-telling-your-kids-youre-getting-a-divorce/, http://www.myaspergerschild.com/2011/11/helping-aspergers-children-through.html, https://carolgraysocialstories.com/wp-content/uploads/2015/10/Spring-2003-ISSUE.pdf. A great book for children and adaptable for various situations (i.e., used as an outline for a more personalized social narrative). All people need the opportunity to grieve in their own way and in their own time. The Challenging Behaviors Tool Kit will provide you with strategies and resources to address these behaviors and help support you during difficult situations. Affirm and ReassureIt is important to allow a person who is grieving to express their feelings and have their feelings acknowledged. Although autism is defined by a certain set of behaviors, children and adults can exhibit any combination of the behaviors in any degree of severity. You might be surprised to know that 1 in 68 births in the United States receive an autism diagnosis with that number increasing every year.. Autism Speaks, a leading autism advocacy non-profit, defines autism as a group of complex disorders of brain … 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. Include this information in a social narrative. Some may  seem totally unaffected. • 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. Sometimes, people with autism display behaviors that are challenging to understand and address. Also includes a portion on sickness, injury, and recovery. Unfortunately, loss and grief are part of life. Posted by The Arc Autism Now Project:https://autismnow.org/blog/bereavement-and-autism-a-universal-experience-with-unique-challenges/  YouTube Video: Dr. Tony Attwood speaking about autism & the death of a parent:http://www.autismsupportnetwork.com/news/video-dr-tony-attwood-autism-death-parent-38490234IRCA online visual narratives for explaining death and associated routines:Death: My Special Person Died: MySpecialPersonDied.pdf. Through our “Autism: A Closer Look” online library, visitors have access to more than 100 Q&As authored by experts about relevant subjects related to supporting children and adults with ASD. Consider involving the individual with autism in the decision-making process about what tools would be most helpful. WAAA provides a range of advocacy services to help adults, youth, and children with Autism Spectrum Disorder (ASD) and other neurological disorders throughout the State of Washington gain access to health, educational services, and other needed supports. Daily routines should be kept the same when possible. But, according to the Centers for Disease Control and Prevention, autism is almost five times more common among boys at a rate of 26.6 in 1,000, than among girls, where the rate is 6.6 in 1,000. 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. Putnum’s Sons. Supporting individuals on the autism spectrum coping with grief and loss through death or divorce. In the case of a death, the individual may wonder if the same thing will happen to them or others they know. For more resources for students with autism and their families, including those for understanding and coping with these uncertain times, please see . This phenomenon has been explained by many people on the spectrum who can articulate their feelings. For individuals, school systems, and organizations interested in purchasing our publications, hard copies are available via our online bookstore. Information may be most appropriate in smaller chunks. 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. 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. 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. My Aspergers Child: http://www.myaspergerschild.com/2011/11/helping-aspergers-children-through.html, IRCA online visual narrative for explaining divorce:Divorce.pdf. 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. Emotional ReactionsChildren and adults on the autism spectrum may react to other’s emotions and physical changes. Supporting individuals on the autism spectrum coping with grief and loss through death or divorce. Lansky, V. (1998). 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. 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. Copyright © 2021 The Trustees of Marge Heegaard’s book is in the format of a workbook. 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. Though traditional psychotherapy is not appropriate for individuals on the autism spectrum, Cognitive Behavioral Therapy (CBT) has been found to be beneficial. Named one of the ten best parenting books of the year by Child magazine. This book is for young children who are typically developing and is likely to be too abstract for most children on the autism spectrum. children with autism develop mental health problems, while 16–35 per cent of autistic adults have a comorbid psychiatric disorder. Some of the possible emotional, cognitive, behavioral, and physical reactions are shared below. Retrieved from:https://carolgraysocialstories.com/wp-content/uploads/2015/10/Spring-2003-ISSUE.pdf . | These strategies are intended to be a menu or toolkit of ideas that may be helpful-- caregivers may take one idea at a time and find a way to make it work for their child(ren) with autism and their family.