Coping with Grief and Loss

VOLUME 01

ISSUE 09

ON THE SPECTRUM IN

ADULTHOOD

June 18, 2020

A NEWSLETTER PROVIDING RESOURCES FOR THE

ADULT AUTISM COMMUNITY

Brought to you by the

Rutgers Center for Adult

Autism Services (RCAAS)

A MESSAGE FROM

THE SCALE DIRECTOR

First, thank you to everyone who donated to the RCAAS, GSAPP, DDDC, or any other cause at Rutgers University during Giving Day yesterday. We sincerely appreciate your generosity!

Switching to this week's topic, I can vividly remember the first time I experienced the loss of someone I loved. I was eating lunch with my sister as a sophomore at Phillipsburg High School when my cousin came into the cafeteria. Our Grandpa Mikey had been admitted into the hospital the night before; however, we were assured his condition would improve. Despite this prognosis, my cousin informed us that my grandfather died that morning.

This experience may not seem unique, but is entirely unique in that it was my experience. We all experience loss differently. Whether losing a family member, friend, or pet, adults on the autism spectrum are no different in that their experiences with grief are personal and unique. In this issue of our e-newsletter, we offer information and resources for understanding, coping, and expressing how loss and grief affect individuals on the autism spectrum. Each individual (autistic or neurotypical) may or may not relate to this content. We only hope to communicate that we all experience grief differently and may seek insight for ways to cope with and express ourselves progressively.

Stay well,

James Maraventano, EdD, BCBA-D

Director, RCAAS-SCALE Program

COMMON MISCONCEPTIONS

Lauren M. Carino, PhD

Assistant Program Coordinator

RCAAS-College Support Program (CSP)

A common misconception about grief and loss is that it has a timeline. You “should” feel better in a week, a month, a year (actually, those “should” statements represent a common cognitive distortion that would have us believe that we have total control over our emotions). In reality, there is no timeline for grieving, and we all go about it at our own pace. When we are grieving, it is inevitable that we will encounter unpleasant emotions (e.g., sadness, hurt) that we try to so hard to avoid, and feel pressured to get through them as quickly (and painlessly) as possible. Again, grief does not have a timeline, and trying to force ourselves to avoid or ignore our feelings will only make us feel worse in the long-term.

When we think of emotional wounds, we can make a good comparison to physical wounds and the time it takes to heal from physical injuries. Let’s say that you are a runner and you break your foot. It would be unreasonable to expect you to run a marathon the next day, or even the next week. If it’s a bad enough break, you may need physical therapy and several weeks (or months) to recover. We give ourselves permission to take time to heal from physical wounds, so it is important to remember to extend ourselves the kindness of time to heal from emotional wounds.

Grief and loss can be some of the most difficult experiences that we face in our lives, so it is important to allow ourselves time to fully process our feelings. Keep in mind that “processing our feelings” means that we need to experience those unpleasant feelings for a period of time, and not avoid them. We can think of avoiding emotions like trying to hold a beachball underwater—it works for a while, but eventually the beachball comes shooting back up with a great deal of intensity. Trying to avoid (or push) our unpleasant emotions away will ultimately not help us feel better. As we navigate this time of unprecedented grief and loss, it’s important to remember to be patient with ourselves, and others, and to embrace the spectrum of our feelings.

AT YOUR OWN PACE

Jenna Budge, LSW, BCBA-Behavior Analyst

Douglass Developmental Disabilities Center (DDDC)-

Adult Program

The loss of a friend or loved one is the beginning of a journey to find your “new normal.” The path is painful and multifaceted for most people and adults on the autism spectrum may experience additional challenges. Difficulties can include connecting with others, expressing feelings, and navigating the social situations that arise after loss. Understanding grief will leave you better equipped to handle it. Recognize and avoid the following assumptions:

Myth #1: Everyone experiences grief in the same way .

There is no right way to grieve. The relationship to the deceased, the nature of the death, personality, and history with loss will affect how one feels and processes emotions after losing someone. You may experience the stages of grief in order, or, stay in one stage for a long period of time. You may feel shattered and broken, or you may be surprised by your own strength. Confront grief without judgment and allow yourself to feel emotions without the additional worry of whether it is "normal."

Myth #2: There is something wrong if I’m not crying.

It is not uncommon to feel numb or behave in a way that is rational. Sometimes your first instinct is to contemplate life or grapple with what comes after rather than confront the loss. Often a person experiences intense grief at a later time. Crying is not a marker of your sadness or relationship with the deceased. Eliminate the expectations of how you "should" feel.

Myth #3: Going through the grieving process means eventually forgetting about the deceased.

Death does not erase the person. In the days, weeks, or months after a loss you may want to talk about the person often. Some feel that when this feeling wanes, the fear of forgetting the person creeps in. But as your pain diminishes, you may be able to celebrate the person or create new traditions in memory of him or her. The eventual stage of acceptance and letting go does not also mean forgetting the person or your memories.

The path to acceptance is not an easy one but arming yourself with knowledge will allow you to have better control rather than letting grief lead the way. Putting one foot in front of the other is the only thing you need to focus on.

COPING WITH GRIEF AND LOSS

Debra Paone, PhD, BCBA-D

Director of Consultation and Training-DDDC

Grief is a complex emotion that accompanies loss. Although often associated with loss due to death, grief can be experienced in response to any loss, such as the loss of a job, a relationship or the diagnosis of a chronic medical condition. In addition to the deep sadness, anger, and yearning experienced with grief, it can be accompanied by physical symptoms such as loss of appetite, muscle aches, difficulty sleeping, fatigue, and headaches.

As individuals go through the grieving process, they may benefit from the opportunity to talk about their feelings. Some may join a support group, while others may lean on friends or family for emotional support to help with the grieving process. While many will find comfort in expressing their feelings in a supportive environment, those who struggle with anxiety or have difficulty with social communication may need other outlets to support them through this time.

Below are some alternative ways to help you or someone you support cope with loss:

Discussion boards: An in-person support group may not be the right fit for everyone. For those who may not be comfortable participating in an in-person support group, an online discussion group offers participants the opportunity to write about their experiences, ask questions, and read about how others in similar situations are coping.

Other forms of expression: Writing memories about a loved one in a journal can be a cathartic experience. Creating a memory book with photographs, or a memory box with a small set of objects that represents your time with your loved one, may bring a sense of comfort.

When possible, maintain some of your routine: After losing a loved one, your daily routine may change due to mourning practices, services, and visitors from out of town. Although it might be challenging, try to maintain at least some of the daily routine. Routines can provide a sense of comfort and stability in the presence of the unexpected changes that accompany loss.

Practice self-care: Take time to engage in enjoyable and calming activities, such as listening to music or going for a walk.

If you are supporting someone with social communication difficulties, use concrete language when discussing loss. Avoid abstract phrases and metaphors.

TALKING ABOUT GRIEF

Courtney Butler, MS, BCBA

Program Coordinator, RCAAS-CSP

As a parent, it is often very difficult to speak with your son/daughter about loss and even more difficult to provide understanding of what may have occurred. Autism Spectrum Disorder (ASD) is characterized by deficits in social communication across multiple contexts, and there may be deficits in social-emotional reciprocity (APA, 2013). Due to these common deficits, it may be even more difficult to have conversations with your son/daughter about loss and finding a good way to cope with the situation. Everyone handles grief in their own way, but there are a few methods you can try to help support your son/daughter through this process.

First, if it is possible and appropriate to have a conversation about the topic, be prepared to fully explain what is occurring. Avoiding the conversation could formulate misconceptions and make the grieving process more difficult. If they are not aware of the situation, your son/daughter may see a change in your behavior and it is important to address why this might be occurring. If a conversation is sufficient, be clear about what is occurring and be prepared to answer any questions that may arise.

It is important that your son/daughter understands that grief can be a process. Everyone experiences this feeling in a different way, and it is important to make your mental health as well as your son/daughter’s a top priority. For mental health resources and more information, check out last week's Special Edition of On the Spectrum in Adulthood . Finally, be patient and understanding if this process takes a bit longer than expected. To help with the process, try to continue your daily routines and keep other aspects of your life as consistent as possible. Keeping everything else consistent will help alleviate the change that is occurring.

EXPLAINING GRIEF

During the pandemic, one may have had to experience grief without being surrounded by loved ones. If you feel overwhelmed, seek appropriate professional help .

This article in Psychology Today provides detail about an adult with Aspergers and her experience with grief. She talks about her journey with sadness, confusion, and resilience. Her story can provide background for adults with autism who may have difficulty coping with the complexities of grief.

Here is another resource that explains the effect grieving has on different facets of life (e.g., work, relationships, etc.). Written from the perspective of a woman with autism, it goes into detail about strategies and activities that helped her through her grieving process. For caregivers, there is also information about how to facilitate the grieving process for an adult on the autism spectrum.

Bereavement by the National Autistic Society provides concrete and easy to understand explanations for illness, death, and complex religious practices. Included is a brief guide that can help one recognize and understand the stages of bereavement.

ADDRESSING LOSS

Pathfinders for Autism provides a short reference guide that gives “quick tips” on how to address death and grieving with people on the autism spectrum. The resource supports the use of concrete language and allowance for emotional expression.

Autism Spectrum Australia published an article detailing key ways to prepare a person on the autism spectrum for an impending loss. It offers suggestions on how to assist them with various transitions that may occur due to the life change.

In her blog , Elizabeth Graham discusses how individuals on the autism spectrum experience the bereavement process in a unique way. Additionally, those on the autism spectrum may require extensive support during their journey to recovery due to possible predisposition to experience additional challenges during times of grief.

SOCIAL STORIES

If your son/daughter is not able to have a conversation about grief and coping with loss, preparing a social story may be a good way to relay significant information.

Check out these links for more information about social stories:

QUOTE OF

THE WEEK

“Grief can be the garden of compassion. If you keep your heart open through everything, your pain can become your greatest ally in your life’s search for love and wisdom. ”

–Rumi

ANNOUNCEMENT:

Thank you sincerely to everyone who participated in Rutgers Giving Day by making a donation or helping spread the word. Your contributions are much appreciated and will make a difference! #RUGivingDay

In case you missed it, you can always make a donation through the Rutgers University Foundation to RCAAS , CSP , GSAPP , or the DDDC anytime!