When it comes to aging, death and dying, individuals with and without autism often choose to ignore the truth of their own mortality. All too frequently, cultural and personal inhibitions keep families from engaging with this truth. This avoidance of death and dying produces anxiety, and keeps individuals from moving through fear and grief to acceptance and peace.
As Temple Grandin wrote in Thinking in Pictures and Other Reports from My Life With Autism, “Unfortunately, most people never observe the natural cycle of birth and death. They do not realize that for one living thing to survive, another living thing must die.”
This being the case, how can parents and caregivers support adults with autism as they encounter the aging of those they love and depend upon? The aging process of a caregiver can be a confusing, destabilizing process; yet, it can also be an empowering one.
To a great degree, the difference between these two extremes of experience lies in thoughtful preparation, effective communication, and practical consideration. As such, parents and caregivers can plan ahead, engage in dialogue, and take specific steps toward making the aging process a journey of love and discovery, rather than one of devastation.
A primary, pivotal step for parents and caregivers is to recognize the need for thoughtful preparation on the topic of aging and mortality. The heart of this realization lies in the fact that individuals with autism process information differently. Given the fact that autism is a spectrum disorder, it involves varying degrees of comprehension and communication capability.
As such, they may understand abstract ideas such as aging, death, and dying in their own unique way; or they may not grasp these concepts at all. The place at which to begin preparing for each new life stage will vary depending upon the individual. Every individual with autism will have their own life experience and perceptions that will influence their ideas about aging.
Likewise, individuals with autism will cope with the aging process according to their own personalities and temperaments. Parents and caregivers often have a deep understanding of the thought processes and communication styles of their loved one, which makes them ideal candidates to speak to the individual about the aging process. If they are uncertain as to their loved one’s level of understanding, they can start with a few exploratory questions such as, “What is dying?” or, “What happened to [person the individual knows who has passed away]?”
Alternately, parents and caregivers can also begin with an image, song, or story that represents aging and dying, and gauge their loved one’s reaction before proceeding. These preliminary inquiries may be helpful in gauging the autism spectrum individual’s grasp of mortality as a concept.
However, parents and caregivers often shy away from such difficult conversations. The painful realities of death and dying are topics that they avoid, and overcoming this avoidance takes personal strength and purposeful energy. This being the case, the idea of preparation as a loving service to individuals with autism is a helpful one. It can be unsettling to discuss one’s own mortality, and parents and caregivers can ground themselves in the idea that doing so is an act of love for their family member.
Parents and caregivers can anticipate reactions of grief, especially if they are approaching the topic for the first time. However, the preliminary grief that accompanies the realization of a loved one’s mortality is an essential stage in the process; without it, the grief of loss becomes both confusing and overpowering.
That said, many parents and caregivers see discussions of death and dying as vital to the spiritual life of the autism spectrum individual they support. In this scenario, they may reach out to church, synagogue or temple community leaders for suggestions and insights. Since conversations about death and dying often lead to questions about what happens after death, parents and caregivers should be prepared to present their own beliefs, but also invite the individual with autism to form their own ideas.
Parents and caregivers can begin to broach the subject of parental aging with their children with autismin a manner that fits within their existing relationship. As Professor Linda Campanelli of George Washington University states, “a ‘general’ step in the process is dialogue….Dialogue throughout their lives.” This approach is valuable in that it invites the individual with autism into a conversation, rather than a lecture.
Further, the dialogue approach allows parents and caregivers to approach aging by meeting the autism spectrum individual where they are. Talking about death may seem unnecessary when no illness or injury is present, but having a conversation about difficult concepts when there is no crisis is much easier than trying to teach concepts when a crisis occurs.
When engaging in this dialogue, it is important for parents and caregivers to remember that adults on the autism spectrum will most likely not understand common, veiled references to death. Vague allusions and expressions such as, “When I’m not here anymore” or “When I pass on” may not suggest death to the individual with autism. Euphemisms such as “passing away” often confuse individuals with autism so plain speech is more appropriate (“He died; she isn’t breathing at all.”) Hence, parents and caregivers need to focus on concretizing the abstract. As Prof. Campanelli notes, “For many, the autism spectrum implies some intellectual disability, wherein abstract concepts are not understood. So the challenge is to make the idea of aging concrete.”
Parents and caregivers may find that anxieties about the future of the autism spectrum individual arise more frequently in this planning process. When fears arise, parents and caregivers should prepare for (and ease their anxieties about) the aging process by making practical preparations. In the course of daily life, tasks such as setting up a Special Needs Trust, assigning guardianship and making a will are, too often, the ones that are put off until “later”.
However, these tasks are essential supports for an individual with autism, and parents and caregivers need to prioritize these long-term considerations amidst the tasks and demands of routine care. As Diane (not her real name), a mother of a young adult with autism says, “I know that my husband and I need to make our will. It’s an important preparation. But it’s hard to prioritize it…and it’s also very difficult to imagine our son’s life without us.”
Many parents and caregivers feel this same mixture of guilt and dread at the thought of making their own wills. To initiate this challenging process, they can choose to start small. Each week, they can take simple, practical steps to ensure that their loved one will have adequate provision, and that their loved one’s wishes regarding death and dying will be respected.
For some parents and caregivers, a practical preparation step may be scheduling an appointment with a lawyer to create a will; for others, preparation may mean researching options for residential placements, or initiating a conversation about what their loved one’s final days might look like. Documenting these conversations is another key step, as notes on the topic can be saved and passed along to residential providers, next of kin, or additional guardians. Use of pre-existing templates such as the Five Wishes document may be helpful in this process.
Further, parents and caregivers can work to ensure that individuals have a solid support network long before they anticipate being unable to care for their loved one. This task, perhaps more than any other, is an excellent preparation for the future.
As Prof. Campanelli notes, “It is difficult to raise a special needs child without the love of family to rely on when things get rough or simply to provide distraction or respite or support in any form.” Likewise, Prof. Campanelli suggests ensuring the involvement of family members and loved ones, so that, should parents pass away, other caregivers who are familiar to the autistic child or adult can step in.
Doing so may seem like an act of letting go, but it is also an act of love and consideration for the individual. For example, allowing a friend or family member to become a bigger part of an autism spectrum individual’s routine may make a significant difference in terms of the individual’s feeling of continuity and security should their primary caregiver pass away. (This is another area in which communities of worship may play a significant role.)
Having a support network that knows and understands an individual with autism is vital to both the individual and the parent alike, especially in times of grief and loss. Furthermore, parents and caregivers can plan ahead and consider how to prepare a specific farewell for their loved one.
Leaving A Legacy
Thoughts of their own mortality may lead parents and caregivers to feel a sense of powerlessness and grief as well. With these feelings may come a line of questioning: “Will my loved one remember me?;” “Will they remember the things I told them?;” “Will they know I loved them?” When these thoughts arise, making a specific gesture, such as preparing a video to be viewed by their loved one after their death, may be a healing step to take.
Prof. Campanelli reports, “Personally, I have often thought of making a DVD to talk to my son about the fact that I have gone to become a star in the sky….and possibly to record a favorite book for him or just to talk to him. It would be something I leave for him in the event of my death.”Similarly, Diane says, “Every time my son goes to respite care for a visit, I think about the fact that he’ll likely live without us one day. With that in mind, I pray with him each night, and talk with him about his future. I want him to know that his father and I love him now, and that we will always love him.”
In making preparations, facing challenging conversations head-on and putting practical supports in place, parents and caregivers can leave a legacy of love that will endure.
Caroline McGraw is an author, speaker and columnist. She is a regular contributor to Autism After 16, where she covers autism aging issues. Her background includes work as a program director and consultant with L’Arche Greater Washington, DC where she worked with direct care services for adults with special needs. As a sibling of a young man with autism, Caroline’s stories have been featured in an independent documentary film, My Brother, by filmmaker Edwin Mah. Caroline is the creator of “A Wish Come Clear,” a blog devoted to helping recovering perfectionists choose love, lose fear, and find home.