Dr. Ann’s Corner: Cyclical Grieving for Parents of Children with Autism

Parent and Hopebridge Psychologist Dr. Ann Hetzel Shares the Stages of Grief and How to Cope

By Ann Hetzel, Ph.D.

Parents of atypically developing children have a never-ending list of things to think about. Some of these concerns are the same as those experienced by parents of typically developing children, while some are unique to parents of children with special needs.

At some point in their lives, a common concern for all parents (and most humans) is grief, an intense sorrow or keen mental suffering due to loss. A unique concern experienced only by parents of atypically developing children, such as those with Autism Spectrum Disorder (ASD), is referred to as “cyclical grieving.”

To better understand differences and similarities between the two, let’s look at grief and cyclical grieving:

Grief in Common Terms

“Grief” is a common and healthy emotional reaction that occurs following the loss of a person, a home, a job, a pet, a marriage, or anything that is of importance. This reaction to loss may take many forms, including physical, such as:

• Anxiety
• Panic attacks, including difficulty breathing and chest pains
• Fear
• Crying/feeling emotional
• Finding it hard to sleep/fear of sleeping
• Insomnia/hypersomnia (over sleeping)
• Fatigue or exhaustion
• Restlessness; feeling unable to sit still
• Difficulty concentrating
• Aches and pains, e.g., headaches, backache, neck pain
• Loss of appetite/comfort eating
• Weight loss/weight gain

Stages of Grief

The well-known psychiatrist, Dr. Elisabeth Kübler-Ross, proposed that grief occurs in five stages.

1. The initial stage, denial and isolation, tends to be brief. Denial, a common defense mechanism, serves to buffer the pain of loss. The grieving individual may not want to believe what is occurring and that it is occurring to them. After the initial shock subsides, the grieving individual may experience denial, refusing to believe what has happened, and may remain focused on the past.
2. The next stage, anger, occurs when the individual realizes and understands the gravity of the situation. They may become angry and many seek someone to blame. Anger can be expressed in many ways. While some grieving individuals take it out on themselves, others may direct it onto others. He or she tends to remain irritable, frustrated and short-tempered during this stage.
3. As the stage of anger subsides, bargaining begins with its focus on ways to postpone the inevitable and the search for the best that remains. Grieving individuals faced by a trauma other than death may attempt to negotiate or compromise with their higher power in an effort to bring themselves relief.
4. During the depression stage, the grieving individual tends to feel sadness, fear, regret, guilt, and other negative emotions. It may feel to this person as though they have ‘hit rock bottom.’ Signs of clinical depression may be noted.

Dr. Kübler-Ross stressed that grieving individuals do not necessarily progress through the stages in the same order, nor does each of them necessarily experience all five stages. Grief is not usually a ‘once and done’ process and is better conceptualized as a spiral. Grieving individuals may exist within the spiral, experiencing various Kübler-Ross stages for periods of time. They may also exist outside of the spiral for periods of time. Months or even years after the loss, individuals may experience a reminder that sends them back to the grief spiral at one of the five stages.

What is crucial to understand is that no two people grieve in the same way. We are individuals! Each of us has unique ways of grieving based on who we are, the type of loss we experience, the circumstance(s) of our loss, our current mental health, our current physical health, our cultural background, and other factors.

How Cyclical Grieving Affects Families Touched by Autism

There is a related, yet distinct situation referred to as “cyclical grieving” that occurs in parents of children with special needs such as Autism. Here, the word cyclical is used to describe the reoccurring aspect of one or more emotions that are part of the initial grieving process. These emotions include, but are not limited to: anger, anxiety, denial, depression, disbelief, frustration, guilt, helplessness, loneliness, nothingness, sadness, and shock. Parents experience cyclical grieving intermittently throughout the lifespan of their child.

• A variety of events appear to trigger cyclical grieving. Some examples of what this can look like include:
• The child’s health or behavior issues;
• The child’s developmental milestones or age-appropriate expectations for the child;
• Family issues and relationships;
• Aging parents and retirement concerns;
• Unusual/challenging caretaking demands;
• Professional and programmatic issues (i.e., school and medical);
• Society’s lack of understanding and sensitivity;
• Even seemingly insignificant events

Therefore, when the parent of a child diagnosed with Autism views their child’s same-age neurotypical peer achieving milestones that their child has yet to reach, this can also trigger the cyclical grieving process. The parent may feel deep sadness and emotional pain; much like the emotions they experienced when their child was initially diagnosed. Due to the seemingly infinite number of developmental milestones (e.g., physical/motor, cognitive, educational, social/emotional, communication/speech and language-related, etc.), parents of children diagnosed with Autism may intermittently and repeatedly experience similar emotions.

Why is it Important to Talk About Cyclical Grieving?

As a parent of a child on the Autism Spectrum, as well as a professional working with parents of children with ASD, it feels extremely important to share this information so that no parent is caught off-guard when they experience these strong emotions.

Additionally, it is imperative that professionals and parents alike provide support to those who experience cyclical grieving as no one experiencing these powerful emotions should feel as if they are alone. One place to get help is through a licensed psychologist, licensed professional clinical counselor, or licensed social worker who specializes in treating grief. For assistance seeking a licensed mental health professional, click on “find a therapist” through the Psychology Today website.

Please remember, experiencing strong emotions during the cyclical grief process doesn’t in any way indicate that there is something wrong. In fact, these strong feelings are going to be experienced by most parents and caregivers of children on the Autism Spectrum because of the great love they feel for their children.

You are not alone! We are here to support you, so can also reach out to us and other Hopebridge community parents on our Facebook page.

*Informed consent was obtained from the participants in this article. This information should not be captured and reused without express permission from Hopebridge, LLC.