How to Talk With Children With Autism About Death and Grief

When Benay Josselson’s husband, Steven, died suddenly at age 39, she knew she was entering uncharted territory. In the midst of dealing with her own devastating loss, she needed to help her young children, ages five and eight at the time, process the death of their father. Making matters more complicated, the older of the two boys has autism, and Josselson quickly realized that the traditional methods of understanding death and dying were not compatible with how her son processes information.

How to Talk With Children With Autism About Death and Grief https://www.autismparentingmagazine.com/talk-about-death-and-grief/

Many children’s books approach the topic metaphorically, using animals or objects in nature to provide a gentle way of introducing the topic of death and dying. For many children with autism spectrum disorder (ASD), understanding these metaphors is extremely difficult. These types of books in which the reader is required to make the leap from animals to people are simply not accessible for many children with autism.

So how can parents and caregivers help our children grapple with topics as challenging as death and grief?

First and foremost, take a moment and recognize that everything you do to support your child on the autism spectrum every day can be extrapolated to guide them through the death of a loved one and the grief that may follow. Think about how you prepare your child for any change in routine, new experience, understanding others’ emotions, sensory challenges and their own personal feelings. All of these strategies are relevant as you help them navigate death and grief.

Second, just as animals and objects in nature are challenging metaphors for children on the autism spectrum, so too can abstract ideas like “passed away,” “gone,” “sleeping” or “better place” provoke anxiety and confusion. When talking about someone who is dying or has died, use the real words. While “dying” or “died” may feel harsher to an adult, children will feel less puzzled and scared not having to “guess” at what you are trying to tell them.

In cases where it is possible to anticipate the loss (as opposed to a sudden death), it can be helpful to talk with the child as it is happening as a way to prepare for the eventuality of death. Using language that is open, honest and concrete can go a long way in helping a child with special needs navigate this complex issue.


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Third, anticipate the practical changes in routine that happen after a death, and utilize previously helpful strategies as you support your child during this time. For instance, if the child will be attending a funeral or memorial service, you can write a checklist with the day’s schedule and have the child check off activities as the day goes on: get dressed up, drive to the funeral service, sit at the funeral, drive to the cemetery, etc. It can also be helpful to verbally prepare the child or draw simple pictures about what they might see and experience at each step in the process. Have a trusted adult available to be with the child during a funeral in case a break is needed, and have comforting items on hand such as a favorite toy, fidget, or stuffed animal.

Lastly, consider the emotional and sensory challenges that may emerge after someone has died. Since some children on the autism spectrum may have difficulty reading the emotions and social cues of others, try preparing the child for the range of emotions they might see: People cry as a way to express their sadness about the death, and laugh when sharing a funny memory.  Let the child know that people might want to give them hugs as a way to offer comfort, and try to make a plan with your child so they can take a break. These discussions and preparations may also help the child better identify and understand his/her own feelings.

As you continue to support the child, help them remember the person who died in ways that are meaningful and accessible. For example, if the aunt who died often traveled by train to come visit, you can help make a connection between that and the child’s love of trains. As a caregiver, keep in mind that your child may regress or turn to self-soothing behaviors during this time. Be prepared to answer questions and offer the kind of support that works for the child, such as quiet time, playing outside, or other preferred activities. Remember to utilize your whole team, and inform teachers, therapists, and counselors of the death so they can work with you in supporting the child during this challenging time.

Helping any child navigate the death of a loved one can be daunting, but may be particularly so when the child has ASD or other special needs. As Benay and so many others have discovered, though, when done in a way that takes into account the child’s specific developmental, social, and learning needs, a discussion such as this can be not only meaningful but can serve as an important foundation as the child grows.

Arlen Gaines, MSW, LCSW-C, ACHP-SW is a clinical supervisor and social worker with an advanced certification in hospice and palliative social work. She received a Master of Social Work from the University of Maryland with a specialization in Aging. She has worked at the Jewish Social Service Agency Hospice in Rockville, MD for the past ten years, and has developed a specialization in supporting families who have children with special needs around grief and loss. Ms. Gaines lives in Bethesda, MD with her husband and two children.

Ms. Gaines and Ms. Polsky are the co-authors of the award-winning “I Have a Question” series, which explores complicated life transitions geared towards children, inclusive of those with special needs. I Have a Question about Death, received a bronze medal from the Moonbeam Children’s Book Awards, and I Have a Question about Divorce was released this year.

Website: www.ihaveaquestionbook.com

Facebook: @IHaveaQuestionBook

Twitter: @questionaboutbk

Amazon: I Have a Question about Death: A Book for Children with Autism Spectrum Disorder or Other Special Needs

This article was featured in Issue 79 – Managing Everyday Life

Meredith Polsky

Meredith Polsky, MSW, LCSW, MS has been working at the intersection of social work and special education for close to 20 years. She has a proven track record of recognizing an unmet need and creating a successful solution. She founded Matan, Inc. (www.matankids.org) in the year 2000, recognizing a significant gap in the Jewish community’s ability to include children with special needs and their families. She has successfully taken Matan from the idea stage to a nationally recognized non-profit organization that has changed the face of Jewish education for tens of thousands of families. She currently serves as National Director of Institutes and Training at Matan, and Developmental Support Coordinator at Temple Beth Ami Nursery School in Rockville, Maryland. Ms. Polsky is a 2017 Covenant Award recipient and lives in Gaithersburg, MD with her husband and three children.

  • Avatar Stanley Jaskiewicz says:

    I saw your article about “How to Talk With Children With Autism About Death and Grief”. My son (now 21) has Asperger’s Syndrome. I wrote an article about how we told him about his mother’s advanced cancer diagnosis (https://www.inquirer.com/philly/blogs/diagnosis-cancer/Explaining-the-Diagnosis-How-can-you-help-a-child-with-developmental-issues-process-a-parents-serious-illness.html), when he was 18. I also wrote the following story to help him with his great grandmother’s death, when he was 8. (He is hyperlexic, and could read before he was 3; he learns far more by reading, than by listening.)
    ________

    Good Bye to Baba Susan

    After camp on Tuesday, we will go to Hazleton to say good bye to Baba Susan. Since we do not want to be late for this important day, we will eat a snack in the car, on the way to the hotel.

    The hotel is called Genetti’s. This is the hotel in the pictures from Mommy and Daddy’s wedding. We will put on nice clothes at the hotel, just like for church on Sunday.

    Next, we will go to a funeral home, called Bonin’s. Baba Susan is living with Jesus now, but her body will be there. She will have her eyes closed, and not be moving. She will be wearing nice clothes so that all of her family and friends can say good bye too.

    You may feel sad to see her body, and it is OK to cry. But the sadness will go away, because we know that Jesus will take good care of Baba Susan. When Baba Susan is with Jesus, she will not be sick or tired or sore anymore.

    After 6:00, there will be a lot of people who come to see her too. Uncle Richie, Aunt Patty, Baba Marcella and Aunt Carol will be in the front, along with Mommy and Jennifer. Some people may be crying too, because they will miss Baba Susan.

    When people are visiting Baba Susan, it is important to be quiet, and follow Mr. Fink’s rules. We do not want to disturb anyone who came to say good bye to her.

    In the middle, everyone will stop to say a long prayer together, so we all should stay still and quiet during the prayer. The prayer is called “the Rosary”, and it reminds us of Jesus’ mommy, Mary.

    You will stay with Daddy. You can stay in the front, or you can go to another room with Daddy to play a game, or read a book. If you are hungry or thirsty or need to go to the bathroom, you should ask Daddy.

    After 9:00, when everyone has said good bye to Baba Susan, the priest will say a prayer. Then we will go back to the hotel to watch television, and then go to sleep. We can get something to eat if you are hungry. You will sleep in a bed with Daddy, just like when Mommy was on vacation.

    On Wednesday, we will get up early. The hotel will have breakfast in the lobby, and you can go with Daddy or Jennifer to pick out what you want to eat. We will pack our clothes to put in the car.

    Then we will put on nice clothes again to go back to Bonin’s. There will be sad music. Then we will follow the cars to the church, Holy Trinity, on Wyoming Street.

    At church, we really have to follow Mr. Fink’s rules, and be quiet and stay in our seat (it is called a pew). You can read books just like at Corpus Christi. If you need to go to get a drink of water or to go to the bathroom, you can ask Daddy to take you. If you want to sit in the back, you can ask Daddy to take you.

    At church, some people may be crying, especially Uncle Richie and Baba Marcella. Baba Susan was their Mommy, and they will be sad to miss her. But everyone knows that Jesus will take good care of Baba Susan.

    After the last song, we will all to go to the car, to go to the cemetery. It may be raining. Baba Susan’s body will be in a box. The workers will put the box in the ground. If we want to come to say a prayer to Jesus for Baba Susan the next time we go to Hazleton, we will know where to go at the cemetery.

    After the cemetery, we will go to a restaurant. The restaurant has funny things on the walls. There will be a lot of people at the restaurant. If you feel bad at the restaurant, you can ask Daddy to take you another place, like Wal Mart, or a bowling alley. After the restaurant, we may go to say hello to Baba Marcella and Aunt Carol.

    When everything is done, we will come home to Lansdale, so that you can go to camp on Thursday and go to the pool party at Ryan Dunne’s house.

    Baba Susan was very nice to all of us, and gave you nice presents. We will be sad that we miss her, but happy that she is living with Jesus.

    CHECKLIST: 1. HOTEL AND NICE CLOTHES
    2. BONIN’S UNTIL 9:00
    3. HOTEL AND SLEEP
    4. WEDNESDAY – BREAKFAST AT HOTEL LOBBY
    5. PACK AND PUT ON NICE CLOTHES
    6. BONIN’S AND THEN FOLLOW CARS TO CHURCH
    7. FOLLOW MR. FINK’S RULES IN CHURCH
    8. FOLLOW CARS TO CEMETERY
    9. GO TO RESTAURANT.
    10. GO TO BABA MARCELLA’S HOUSE.
    11. GO HOME HAPPY.

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