We All Grieve: Understanding How to Support People with Autism

As the holiday season ends, we all know that feeling of taking down the festive holiday décor and boxing it up for the next year. For some people, it might bring a feeling of joy to have some organization back into their home. For some, it may bring a sense of sadness and change to let the excitement of the holiday season go. This time of year can be a challenge for a lot of people. It can be a time of letting things go, a change of routine, and can trigger the experience of grief and loss.

Grief is powerful and can affect people in different ways. A person can find ways to manage and live with their grief, but it may never fully go away. Different things can trigger feelings of grief in a person, such as the holiday season, the loss of a loved one, or the death of a pet. Other events can also cause grief such as:

• Leaving their family
• Losing consistent staff
• Loss of abilities
• Loss of something meaningful to the person, such as a hobby
• Loss of a job
• Friends moving
• Anniversaries of death, divorce, or loss
• Big life changes

It is important as supporters that we are aware of what is happening in a person’s life, as well as any anniversaries of important and impactful events in a person’s life so we can try to determine if a person is grieving.

Many of us have the privilege of supporting an individual on the autism spectrum. People on the autism spectrum can have difficulty expressing their emotions and labeling what they are feeling. They may present their grief a little bit differently, but we must remember, as supporters, that they are still experiencing grief and that their feelings of grief are valid, even if the way they are expressing it might not look like what we view as “normal.” Grief is not and will never be clear cut nor the same from person to person.

The most important thing to remember is that what a person is going through matters. It is often said that we don’t want to “upset” the person by talking about a loss or change, and that “they don’t understand what is happening.” By avoiding the subject and assuming the person is “OK,” it can make things worse. Some ways that an autistic person might express their grief are:

• You may not see a change in a person’s outward expression of emotions, but that does not mean they are not feeling deeply
• You may see regression in skills
• You may see an increase in anger or agitation
• You may see an increase in self-soothing or “stimming”
• You may see physical manifestations, such as increased headaches, stomach issues, dizziness, diarrhea and vomiting, or bed wetting
• You may see sleep disturbances, either the person is sleeping more than usual or isn’t sleeping
• You may see an increase in echolalia, or the person may ask the same questions repeatedly
• You may see an increase in anxiety, or things the person does when their anxiety is high, such as pacing, rocking, fixating on certain things, or needing to be near supporters at all times

During the grieving process, there are many ways we can respectfully care for and provide support to people. The most important way we can help the individual is by meeting them where they are on the journey. Everyone will grieve differently, so everyone will deal with their grief in different ways. It is important to check in with the person and ask what they are comfortable sharing and what may be the best way to help them. Some other tips to help support an individual on the autism spectrum through their personal grief journey are:

• Be honest about the journey, let the person know that it is not always easy
• Always remind people that they are safe and that you will be there to listen
• Always validate the person’s feelings
• Be nonjudgmental about what the person is grieving
• Listen to listen, not to give advice
• Add more visuals about the situation, including schedules and social stories
• Decrease change during the grieving process
• Work on tasks together, even if they were once easy tasks for the person
• Determine if a behavior is caused by grief
• Celebrate anniversaries and talk about loss
• Support groups
• Grief counseling
• Journal writing
• Seek help if any behaviors become unsafe

Some phrases that may seem helpful, but may be triggering during the grieving process and should be avoided are:

• Everything happens for a reason
• They are in a better place
• You will not always feel this bad
• At least you live a good life

Some phrases that may be helpful to use during the grieving process are:

• I am here to listen
• I am sorry that happened to you
• What you are feeling is valid
• I am here to help and support you
• Can we do this together?

Resources are available to assist people we support who are on the autism spectrum. The autism and grief project is a website created by the Hospice Foundation of America and is in partnership with the NLM Family Foundation. The Hospice Foundation of America is a leader in creating comfort during end of life care and providing support through the grieving process.

The NLM Family Foundation was created to help people with autism lead rewarding lives. The website provides not only supporters, but also individuals who are on the autism spectrum with relevant and helpful resources to guide through the difficult and complicated grief journey. You can see the website made it a priority to not only use person first and respectful language, but also to provide resources in different ways, including visual aides to better reach all of the possible users.

Some of the resources available are: articles about grief, different grieving styles, and what you may see when an autistic adult is grieving. There are also visual aides that may be helpful to someone you are supporting, such as visual schedules surrounding a possible grief event like a funeral, or social stories to help someone make concrete sense of the grief journey they may be experiencing. You can visit the website at https://www.autismandgrief.org/ if you feel as though it may be helpful to you or to someone you are supporting.  

The HCQU also has a grief information guide available upon request that lists different grief resources per county. We also have a grief resource section in our free app, DSP Handbook.

As a supporter, helping someone through the grieving process can be hard emotionally, mentally, and physically. Unfortunately, we have all been touched by loss in some way and have been through the grieving process.

Making sure you care for your well-being is vital. We cannot be the best supporters to the people in our care if our own cups are empty. It is important that you identify when and if the situation is causing distress to you. Reach out to a trusted person to talk about it and formulate a plan to ensure your mental health needs are met as well. You are the most important people on the front lines helping, so you must remember your needs matter as well.