Helping kids with autism spectrum disorder navigate bereavement
Death can—and does—happen at any age. According to Columbia University clinical psychology professor, George A. Bonanno, Ph.D., many individuals are resilient to loss and trauma on their own and do not require grief counseling. However, many who are familiar with kids on the autism spectrum tend to agree that for some individuals on the spectrum, immediate and continuous support is necessary.
But how can parents prepare their children with autism spectrum disorder (ASD) to cope when a loved one dies? Stephen M. Shore, Ed.D., maintains, “If you meet one person with autism, you’ve met one person with autism.” The same holds true for grief. If you meet one person who is grieving, you have met one person who is grieving. How someone grieves and mourns will be completely unique to them, which is why it is vital for parents to understand the ins and outs of bereavement. Given that it is common for the first death in a family to be that of a grandparent, this article uses the death of a grandparent as an example.
Do
- be honest with kids about death and consider the details you give
- educate yourself and your child about grief
- include your child in the funeral service and always assume they are grieving
- allow your child to see the body, if possible
- videotape the funeral service
Don't
- use metaphors for death
- assume you are the only person grieving
- stop support after the funeral
- believe you can protect someone from the reality of death
- discontinue rituals and traditions
Do be honest with kids about death and consider the details you give
Do not withhold news of the death. If your child has not yet experienced a death in the family, explain grandpa’s death with details you feel he/she can handle. Regardless of the details you give, always ensure kids understand what you have told them. If they are able to do so, often asking them to explain the information back to you is helpful, to ensure they have an accurate understanding.
Do educate yourself and your child about grief
When flying, flight attendants tell adults to secure their oxygen mask first, before helping others, in the event of an emergency. Educate yourself first before you educate your children. With the rise of death and violence being reported in the news, the topic of death is hard to escape. You would be surprised at what young children may already know. Ask your children what they know about death and address any misinformation and myths they have.
Two recommended books on grief include The Grief Recovery Handbook and When Children Grieve by John W. James and Russell Friedman. These authors also have a great website with helpful articles at GriefRecoveryMethod.com. A good book specifically on grief for individuals on the autism spectrum is Finding Your Own Way to Grieve: A Creative Activity Workbook for Kids and Teens on the Autism Spectrum by Karla Helbert.
Do include your child in the funeral service and always assume they are grieving
Some kids with ASD are non-verbal or not very verbal. Even if they appear unable to do something, always assume they want to participate and be part of activities. Ask yourself how you would feel if you had the means and time to go, but were not allowed to attend the funeral of someone you cared about. Always assume grief–even if someone may not be able to express it.
In addition, do not discourage sad feelings. To paraphrase Russell Friedman of the Grief Recovery Institute, why would you take away someone’s sadness any more than you would take away their joy?
Do allow your child to see the body, if possible
Many kids with ASD are concrete visual learners. Often, seeing the body can assist with reality, even for individuals not on the autism spectrum. There is no denying that seeing a dead body of a loved one is difficult, but seeing the body can be helpful with coming to terms with reality, which will help with grief recovery. Even if you do not plan to have an open-casket service or viewing, allowing an individual to privately view the body is beneficial.
Do videotape the funeral service
Keep in mind that those with ASD often have sensory issues, such as difficulties with crowds or the smell of incense. Recording the funeral service is beneficial for many kids with ASD. Watching the service later can help with talking about feelings and facilitating discussions, so you can discuss feelings in real-time, which is helpful for individuals who may have a hard time discussing what they were feeling. Watching the DVD of a service a few months after a death also can help you review feelings.
Do not use metaphors for death
Phrases such as, went to sleep, kicked the bucket or he was sick, are examples of what not to say to individuals who are literal interpreters. Try to imagine what would go through the mind of someone who interprets things literally if you were to say some of these things. Death is a natural fear. But if you are trying to comfort someone who is currently fearing death and interprets metaphors literally, do not use metaphors.
Do not assume you are the only person grieving
Let individuals with ASD know that they are not the only ones who miss grandpa. Many with ASD have difficulty understanding that other people experience similar emotions. As a family, you may be grieving the death of the same individual. However, each person is grieving the unique and individual relationship they had. Even two close sisters, who both had a happy relationship with their dad, will be grieving two different relationships.
Do not stop support after the funeral
It can take a month or two for the reality of a loss to begin sinking in. Consequently, continue to provide support after the funeral, when the support tends to cease.
Do not believe you can protect someone from the reality of death
While you do not need to constantly expose your child to death, if the topic comes up in the news or in conversation, use that moment to begin a discussion. Often talking about the death of strangers is a much easier way to introduce and start discussions on death.
Do not discontinue rituals and traditions
As with many kids with ASD, a change in routine can cause anxiety and stress. Continuing traditions that remind you of your loved one is an important part of the grieving process and can help you adapt to life without your loved one. Continue to remember your loved one on birth anniversaries, wedding anniversaries, death anniversaries or the anniversary of a diagnosis. Remember the happy and sad memories of your loved ones.
Summary
Bereavement is a universal loss. While many are resilient in the face of loss, individuals on the autism spectrum may not always be so resilient as their neurotypical counterparts. It is important to be prepared to help your loved one with ASD cope with the death of someone close to them. Death is a major event in life and it is crucial to prepare children for major events in their lives. Find concrete ways to explain death to your child and when the time comes, how to cope with death. Always be available to your children and continue to support them in the days, months and years after the loss.
