As the name of the developmental disorder indicates, children with an autism spectrum disorder are diverse and unique; they are similar to and different from children without autism and with each other. Autism covers a wide spectrum of symptoms, behaviors, and functioning levels. Now add to the uniqueness of autism, the uniqueness of grief – specifically grief over the loss of a loved one.
Something we often say when discussing bereavement is “Everyone is unique in how they grieve. No two people grieve exactly the same way.” This is all the more true when you are supporting children with autism who are grieving. I have had the honor of working with individuals, from young children through adulthood, who have autism and who are grieving. I hope this blog will provide a practical overview on how children with autism can best be supported in their grief.
One of the challenges caregivers of children with autism and grief face is teasing out what is autism from what is actually grief. Social withdrawal, distractibility, fear of separation from others, anger, and anxiety, and an increase in challenging behaviors can all simply be behaviors associated with autism.
Is the child actually grieving?
How does one gauge where the child is at in their grief?
Symptoms of Grief in those with Autism
No doubt, children with an autism spectrum disorder have challenges when it comes to processing grief and loss. They typically struggle with abstract language and concepts. Therefore, some language and conversations around loss may be too abstract for children with autism to understand. Children with autism typically struggle with social reciprocity (back and forth conversation). This may prove to be a barrier for children connecting with others during the grieving process. And, because perspective taking is an identified difficulty for individuals with autism, the child may struggle with recognizing and empathizing with the grief of others.
Generally, children with autism struggle with communication. This struggle may inhibit their ability to express their feelings and so they may miss out on the community support others receive. A child with autism may struggle with rigidity and any sort of change. When grief hits them and their household, this may cause them great distress when loss disrupts their daily routines. Finally, especially for older children, anxiety and depression can sometimes go along with autism. Grief and loss may increase these symptoms.
How can a parent or caregiver support their child with autism who may be grieving?
Ellen Notbohm, an internationally renowned author, wrote the book 10 Things Every Child with Autism Wishes You Knew. Let us take a look at a few of these “things” as they relate to grief and loss.
- I am a child. Your child has autism. It is not ALL of who they are. When grief hits them and their household, they are experiencing the grief, too. Something we often share with families is “If they are old enough to love, they are old enough to grieve.” Whether you realize it or not, a child with autism is experiencing the impact of grief. Look for subtle and not-so-subtle changes in their behavior and allow them to experience grief in their own, unique way.
- I’m a concrete thinker. I interpret language literally. When talking with a child with autism about grief and loss, avoid idioms and metaphor and abstract language. Describe the loss in concrete language and terms. Distinguishing between permanent and temporary loss is important.
When a child’s favorite teacher goes on maternity leave, phrases such as “We will see her again” are appropriate.
However, since death is permanent, those phrases, though spiritually meaningful for many, may be difficult for children with autism to understand. Phrases like “She is in a better place,” or “She passed away” can be difficult for children with autism and can create confusion. Even the term “loss” can be too vague and confusing for some. For permanent loss, it is best to use direct and clear language. Although these phrases, such as “Grandma’s heart stopped working” or “Grandpa died. We won’t see him again,” sound harsh, they may be easier for children with autism to understand.
Remind the child with autism who is grieving the fond memories they had with their loved one can be most helpful.
- Listen to all the ways I’m trying to communicate. Though children with autism struggle with describing their feelings, look out for other ways they may be communicating their feelings: body language, withdrawal, agitation or other signs that tell you something is wrong. Again, allow them to grieve in their own, unique way.
- Picture this! I’m visually oriented. Sadly, children with autism and grief are often left out of family events and rituals surrounding grieving and mourning. If the parent or caregivers believes the child is old enough and mature enough, these rituals and events can be most helpful to their grieving. If the child is old enough, ask him or her if they would like to attend the funeral or viewing. Moreover, as a way of processing feelings and memories, engage the child with autism in hands-on crafts and artwork as a way of him or her expressing their feelings or the memories they have of their loved one.
- Help me with social interactions. Support the child with autism, who is grieving, in connecting with others. Sometimes just the presence of a safe, trusted person will help with this. Encourage other to invite the child to join in when it comes to sharing feelings or memories.
- Identify what triggers my meltdowns. If change, confusion, and the unknown are triggers (things that often accompany the death of a loved one), practice with the child his or her coping strategies for increased anxiety, especially before attending a viewing or service.
No doubt, we all need extra support during times of grief and loss. Children with autism and grief are no different.
If appropriate, including the child in rituals and routines, as well as supports related to understanding the death, expressing their feelings, sharing memories and coping with change. This will allow the child with autism to better understand the loss, process their grief, and practice their coping skills that are most helpful during times of loss.
David Stevenson, M.Div.
Crossroads Hospice & Palliative Care
Certified Grief Recovery Specialist
Crossroads Hospice & Palliative Care offers complimentary grief recovery groups in all the communities we serve. To learn more about these program or to speak with a bereavement coordinator, please call 1-888-564-3405.
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