Autism is clearly a disorder that affects the functioning of the child with the diagnosis. It also profoundly affects the entire family -- parents, siblings, and the extended family. Recognizing and coping with these effects is an important process for family members not only to care effectively for the child with autism, but also for themselves.
Parents must care for themselves first to effectively care for their children.
Important components of this care include the inevitable and normal grieving process and the attainment of appropriate coping strategies. With these parental needs met, attention can then be given more effectively to the child with autism as well as to siblings, grandparents and other extended family members. We will discuss each of these components in turn.
Most family members develop certain expectations, wishes, and fantasies during the course of pregnancy, and these dreams embody their hopes for the future. The imagined baby is a composite of impressions and desires derived from the parents' own experiences. The birth of a handicapped child often leads to family crisis. Even more insidious than difficulties diagnosed at birth are those that are diagnosed through an awareness that the child's developmental course is atypical, such as with autism or another pervasive developmental disorder. The parents must resolve the discrepancy between the idealized image of the child and the reality of the child's special needs. This resolution is a legitimate process of grieving for the anticipated "perfect child" (which actually does not exist).
Children can learn to live with a disability. But they cannot live well without the conviction that their parents find them utterly loveable.
J. Schneider, a psychologist and researcher, offers a holistic model of the grief process that includes not only the biological, emotional, and behavioral aspects of the individual, but also the intellectual and spiritual or attitudinal aspects. More importantly, Schneider focuses on awareness and growth rather than simply a sense of loss. As you review these stages, keep in mind that others -- siblings, grandparents and other extended family members -- must also grieve the loss. They may not experience each stage exactly as you do. The five stages of grief surrounding the entrance of a handicapped child into a family, as well as the growth that follows, are:
1. Initial awareness. This is the stage in which a definable loss first becomes a reality. Manifestations include shock, loss of balance, and increased vulnerability with lowered resistance to illness. Guilt feelings are the most demanding, erratic, and difficult with which to cope. This awareness phase may take on an especially "slow burn" effect with autism or PDDNOS, when awareness grows slowly over the course of child development rather than suddenly, for example, as with a clearly physical disability that is immediately diagnosable.
2. Strategies to overcome loss. This stage includes two very different strategies of coping and is particularly relevant to families with children having developmental disabilities. These strategies range from (1) holding on to the image of the perfect child and a normal family routine to (2) letting go of that image and dealing with the inevitable changes that must that place. In this stage, conflicting emotions are common, especially with a situation in which there cannot be specific answers regarding the outcome of the child. There is a decidedly "push-pull" aspect of this stage of grieving.
3. Awareness of loss. The purpose of this phase of grieving is the intensive exploration of the extent of the loss and its present implications. This particular phase requires much energy resulting in feelings of exhaustion and lowered resistance to illness. Physical self-neglect is often present. As a result of the exhaustion and lowered resistance, the parent agonizes over simple decisions that normally would be accomplished with ease. They may feel, "I cannot get through this day, so how will I ever manage the rest of my life?" Resentment and cynicism are emotional states caused by frustration and are a natural part of the grief process, along with the closely related feelings of sadness and anger. This phase is a very introspective time and loneliness is a prominent feeling. During this phase, family members may spend time appearing to stare off into space, escaping from the pressing urgency of the situation.
4. Completion. The fourth phase of grieving has three separate functions and/or benefits: (1) healing, (2) acceptance of loss, and (3) resolution. The major purpose of the completion phase is to free the grieving individual from the energy invested in the loss so this energy can be utilized in coping with present issues. Parents continue to feel loneliness in this phase and believe that no one can comprehend the depths of their disappointment. Healing and acceptance begin to slowly emerge, and time becomes a valuable friend.
5. Resolution and reformulation. In this phase, an enhanced sense of personal power often occurs for the parents and they begin to show interest in outside activities. Recovery, healing, and a new sense of power emerge. "I can't" often changes to "perhaps this is an option." Acceptance of the disorder and its
impact on the child enables family members to cope more effectively with the demands of the situation. However, various experiences may trigger anger and rekindle a previous stage of grief. Observing typically developing children at play, discussing the child's limitations with others, or having the child excluded from something due to his or her disorder are examples of such triggers.
6. Transcending loss. Finally, parents no longer focus their lives and energy on what was lost. They begin to see more options for both themselves and their child. Once again they begin trusting themselves and their judgments and begin assuming more care and responsibility for their child. Energies freed from grieving may be directed to new activities.
As your child grows and moves from childhood to adolescence to adulthood, he or she will encounter various milestones that may trigger recurring feelings of sadness and grief similar to those experienced at the time of initial diagnosis. Such occasions might include:
- When younger sibling surpasses abilities of child
- Negotiating appropriate services and interventions
- Entry into school
- Onset of puberty
- 21st birthday
Just as your child grows and changes, so will you. You are a developing human being in your own right as well as a parent, and you will have your own changing needs. Such potentially stressful times might include:
- Job changes or physical moves
- Physical illness or other medical emergency
- Changes in family structure through death or divorce
- Care taking responsibility for parents or other older adults
- Pending retirement
So, how does one work through the grieving process most effectively? Here are some suggestions that may help:
Tell your story. Share your journey of understanding with someone of significant importance in your life. How did your child come to have the diagnosis of autism or PDDNOS? What were the indications that led you to seek a diagnosis?
Accept and express emotions. Experiencing a range of conflicting emotions is a natural part of the grieving process. Feelings of guilt, anger and sadness are particularly common. Emotions must be expressed and dealt with openly. Despite cultural norms to the contrary, crying is a natural expression of grief for men as well as women and children. It is not helpful to try to be stoic when the appropriate thing to do is cry. Also, tranquilizers or alcohol cannot do the grief work of an individual. Drugs only delay the mourning process.
Include children in the grieving process. Share with other children not only the practical implications of a diagnosis of autism but also your feelings about the diagnosis. They cannot be shielded from the loss. Silence and secrecy leave much to the fertile imaginations of children, and often children feel that parents are angry at them when they are excluded from sharing their concerns.
Friends are important. A common denominator of grief is loneliness, especially when a child's behavior may make it difficult to be with friends easily. It is important to actively maintain friendships and to share feelings. People in grief tend to avoid "bothering" anyone with their problems. Martyrdom is not a necessary part of the grief process.
Support groups are helpful. Members of a support group such as the PAC Network (Parents of Autistic Children) can help share feelings of frustration and well as practical ideas for coping with the day-to-day realities. They will listen without changing the subject because they really understand. Listening to the experiences of others can also be as helpful as having a receptive ear for your story.
Take care of yourself. Only by attending to your own physical and emotional needs can parents give full attention to the demanding needs of an autistic child. Seek respite care if necessary. Consider formal counseling if you experience difficulty over an extended period of time.