Grief and Autism

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As a young child, I attended an extraordinary number of funerals for family, parent’s friends and pets. Each experience was very concrete for me. I recall standing up on the kneeler with tiptoes to see the body in the coffin. I asked if I could touch the body. My dad knelt next to me. Touching the hard, cold body, I immediately realized it was different than my memory of this person. And in that moment, death became very real.
In Temple Grandin’s movie, it struck me how she always commented when an animal or person died, “Where did he go?” Like her, it was apparent to me as a young child that the spirit of the once living being was gone. The visual and tactile experiences were beneficial and helped me learn how death was a part of life.
Yet, typical losses for children are not confined to the death of a loved one. There are many losses your child will experience – moving, changing teachers, school staff, friends, losing a pet or favorite object. Supporting and teaching children positively through these “little deaths” will improve their coping skills when facing major loss. Preparation and education about death alleviate anxiety. For children with autism, grief is often complicated. While some may never grieve, most do. Some may not grieve immediately after a loss, instead experiencing delayed grief. And some may attach their feelings about this loss to something unrelated, smaller, tangible, and thus more manageable to them.
Researchers have observed the grieving process as profoundly affected by autism. Children with autism may develop bizarre and distorted ideas about death. To avoid this:

  • Questions need to be answered immediately and repeatedly without leaving the child to develop maladaptive ways of thinking.
  • Keep answers simple and matter of fact.
  • Bereaved children need clear, concrete information.
  • Avoid unnecessary or disturbing details and model appropriate emotions and attitudes. Researchers observed that conversations started by parents often caused confusion and increased anxiety in the child.
  • People with autism need help during this process, but there are ways, supported by research, to do this effectively.

The methods listed below are recommended as effective positive behavioral strategies for children with autism in grief.

Social Stories from Carol Gray
Develop an age appropriate story to prepare your child for any death or ritual event. Primer on Social Story elements
If you anticipate a strong reaction from your child at the event, I recommend that you make arrangements for a private viewing, before others arrive. Also, be sure you bring appropriate snacks, drinks and activities for the child. Social Stories can provide increased structure to a difficult event or day. A story may also be written for a child to guide them through the emotions of grief; how to think, act, respond to condolences, or expected activities to engage in.
I never realized how rich my funeral experiences were, until I attended a funeral with my adult friends. For many of them it was the first time they attended a funeral. They did not have a clue about expected behavior. For example, they mentioned their plans to leave immediately after the memorial service. I told them there would be a lunch after the cemetery and that was a very important time to be with our grieving friends. They stayed and were glad they did. Remember the “hidden curriculum” when setting up a Social Story or visual schedule. There are expected ways to behave with each activity, and each serves a purpose. Most elements of funeral or memorial rituals are designed to meet our psychological needs.

Create a Visual Schedule
A well-designed schedule will have meaning to your child with choices and preferences specific to them. A child may need prompting and feedback to establish or reestablish the schedule after a death occurs.
Problem behaviors increase due to unpredictability in the daily routine. In the death of a significant person with family and funeral rituals, unpredictable routines are expected and monumental. In one study, when a random schedule was made more predictable with a picture schedule, problem behavior was eliminated.
Try this method used in the study: A photo book with pockets was used to introduce tokens to establish the schedule. The tokens reinforced successful completion of a task or activity. Tokens would be saved, with a set number to be used in exchange for a desired item. Eventually the tokens may be faded out. An individual schedule may provide structure and help in resolution. For bereaved children with autism, positive reinforcement with tokens may help in adapting behavior and reducing problem behavior.

Addressing Sleep Issues by Mark V. Durand
Sleep disorders are common for bereaved children. Sleep difficulties may be, in part, the result of associating sleep with death. Sleep terrors occur in children with autism; it is sudden arousal from sleep with crying, screaming and intense fear.
In this study, parents were trained in intervention techniques and data collection. Parents recorded bedtime, how long it took the child to fall asleep, onset and duration of sleep terrors, waking time, nap time and duration on sleep charts. Behavior logs were kept for bedtime and sleep terror episodes. Once the baseline data was established, parents began the intervention.
Parents woke the children thirty minutes prior to data-based sleep terror times with a light touch, until eyes were open, then they were allowed to go back to sleep. This was repeated every night until the child went seven nights in a row without an episode. Once achieved, parents were to skip one night and continue with awakenings the other six nights. One additional night a week could be dropped if no sleep terrors occurred. If sleep terrors did occur, parents were instructed to return to the original scheduled awakenings of seven nights per week. In explaining the intervention to the parents, Durand used a computer analogy. Sleep terrors occur during deep sleep, waking the child prior to a sleep terror allows them to “reboot” their deep sleep. Scheduled awakenings should be gradually decreased over time. In this study many parents resumed their normal nighttime routines as soon as the sleep terrors subsided.
Durand provided empirical evidence of the success of a behavioral intervention useful in chronic sleep terrors of children with autism. The increase in sleep each night promises to help the child and caregivers during a vulnerable time in grief.

Floortime by Stanley Greenspan
The literature in grief states that children need a “helping-healing-adult” to accept them, be with them, not prod them, but to provide opportunities for the child to share about the loss in their own time. This involved “space and silences” to discuss or simply sit in the child’s presence with understanding of the loss. Time spent with the child in this way, enabled the parent to better understand and help the child during a difficult time.
Stanley Greenspan developed Floortime, where space and silences provide at home “therapy.” For the young, self-absorbed child, it is recommended to begin at the first stage of emotional development. (Details on stages of emotional development here.) For many reasons, any child may not be able to move from one stage to the next on their own. Floortime is a therapeutic time to simply “be” with the child and help nurture them through to the next stage.
Bring this therapeutic space into your home during times of grieving. Set up a regularly scheduled time to sit at your child’s level, on the floor. Spending time without an agenda is critical. Greenspan advised caregivers to not leave the child alone or in their own world. Help is given by “inserting yourself” into your child’s world. The goal is to foster initiative, rather than passivity, by prompting and stimulating. Physical activity included motion, sound, touch and color to provide stimulation and improve motor tone. Greenspan defined the problem-solving time specific to engage the child with reality and empathy by taking an interest in how they are feeling. This is especially vital in grief.
Floortime provides opportunities to model appropriate grieving behavior, verify or affirm the child’s emotions, sadness, pain or anger and reassure the child they are loved and will not be abandoned. In grief, children reported that discussing their experiences with a supportive caring adult was beneficial, with a decrease in depression and problem behaviors for these children. Floortime connects the parent with the child, at the child’s level.

Create memorials or touchstones
These are things we hold dear to remember the person, pet, or place that we are grieving. During Floortime, if the child is willing, I recommend this be a time to create a photo or scrapbook. Think of an item the child may want to “inherit.” For my daughter this was a little ceramic turtle she played with at grandma’s house. It helps them to have a tangible, concrete item to remember and keep. It also allows the child to attach their feelings to an appropriate object and creates a space in which they can grieve. This gives the emotion structure and makes an abstract process concrete.

I believe it is important to model grief and show children with autism how you are managing through the process. Give children very visual and concrete ways to experience grief and be comforted. More information on any of the above interventions can be researched online or at your library. Good luck on the journey.

Author: Tammy

Tammy is a Director of Special Education, Autism Specialist, Behavior Specialist and parent. She is dedicated to helping families by sharing her expertise as it applies to everyday challenges. Read her full bio here.

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