As a parent with a 25-year-old son with autism, I am often asked what advice I would give to parents with a newly diagnosed child. My response is the same advice I give to new mothers as a nurse on the maternity unit. Parental emotional adjustment to a new baby is analogous to the adjustment to learning that your child has autism.
One of the first maternity specialist, Reva Rubin (1961), identified three psychological phases of the adaption to motherhood: taking-in, taking-hold, and letting-go. During the taking-in phase, the new mother needs to focus on her own needs, and she is dependent on others. She is very talkative about the details of her labor and delivery experience. As she moves to the taking-hold phase, her focus shifts to the care of the baby and competent mothering. She has the desire to take charge, although she still needs some nurturing and acceptance from others. The mother is eager to learn, but she may experience some emotional ups and downs. In Rubin’s last phase, the mother focuses on moving forward as a family. During this time, the maternal and paternal roles in the newborn’s care are determined. And, eventually, the relationship with the partner and sexual intimacy returns.
The role development of the new father has different issues. Goodman (2005) describes four phases. In the first phase, there is the expectations of how the newborn will be integrated in the family. Fathers have specific intentions on how it will be accomplished. Fathers, during this phase, desire an emotional involvement and deep connection with the infant. Then, comes phase two. Reality sets in. This phase is characterized by unrealistic expectations, frustration, guilt, helplessness, and inadequacy. During phase three, expectations are altered and new priorities are established. Fathers are redefining the role by negotiating with the partner, learning how to care for the infant, increasing their interaction with the infant, and they struggle for the need for recognition. All this helps the new dad create his personal role as the father. In time, fathers reap the rewards. The baby’s smile brings a new sense of meaning, completeness, and immortality.
At the time of their child’s autism diagnosis, parents have described their feelings as grief, relief or disbelief. According to Hutton and Caron (2005), 52% of parents felt relieved, 43% felt grief and loss, 29% felt shock or surprise, and 10% felt self-blame. At this moment, the hopes and dreams for this child are lost (Gargiulo & Graves, 1991). There is grief for the loss of the perfect child (Ellis, 1989). Therefore, it is common that parents go through the stages of grief. Mothers and fathers proceed through the stages at different rates, vacillate between stages, and may even go through them in a different order. The stages of grief for the parent of a child with autism, described by Naseef (2013), are denial, anxiety and fear, guilt, shame, depression, anger, and hope. The grieving has biological, intellectual, emotional and behavioral aspects. For those parents that felt relieved with an autism diagnosis, the diagnosis was a validation. They may have initially offered excuses for their child, but seeing the differences from their previous children or playmates helped them move through denial. They recognized “something isn’t right.” For those that are consumed with disbelief, they may have been caught totally off guard. These parents may be unfamiliar with typical development. Their denial may be an unconscious avoidance of anxiety and cannot “hear” what is being told to them. The denial may be a coping mechanism while they mobilize their resources (Hutton & Caron, 2005).
So how does the mother adapt to the diagnosis of her child with autism? It goes back to Reva Rubin. The mother takes the diagnosis in. She seeks out ways to get her basic needs met. The need for information. The mother needs to understand what autism is, how her child is affected, and starts to realize its impact. In the second phase, she takes-hold. Much like when her child was a newborn, her focus is on the child and being a competent mother. She has a desire to take charge. It often is characterized as “Get out of my way” while I figure what this autism is and what we are going to do. Mom is very eager to learn. She needs others to accept her new role, to support and nurture her quest. The letting-go phase, described as moving the family forward as a unit, is a very crucial one. There needs to be resolution of individual roles, reassertion of relationships with their partner, and resumption of intimacy. This phase has a significant impact on the father.
After the diagnosis for the father, there is a parallel to Goodman’s phases. During the first phase, the father still has the desire for an emotional involvement and deep connection to the child. Reality needs to be confronted that the degree of involvement and his emotional connection to the child is in jeopardy. The expectations he originally had for this child may be unrealistic. The dad has feelings of frustration, disappointment, guilt, helplessness, and inadequacy to be able to “fix” this problem. In the next phase, he must alter the expectations, establish new priorities, redefine his role, negotiate with his partner, learn to care for this child with autism, realize the increase in the needs for this child, and may struggle for recognition of his contributions. The final phase, reaping rewards, has some uncertainty, similar to when this child was a newborn. There is a new sense of meaning, and completeness and immortality needs to be redefined. Much like the arrival of a newborn was a life-altering event, the diagnosis of autism is life-altering. The key is moving beyond the crisis to taking on the challenge.
So, parents of newly diagnosed children, I give you the advice that I give new mothers: (1) Take care of yourself. You need to have your needs met in order to be available to your child; (2) Give love and attention to the siblings so there is no resentment or jealousy; (3) Maintain and nurture the relationship with your partner. You will need their support and love; and (4) Do not create a job no one else can fill. You may know your child the best, but others can help and lighten the load.
Like the birth of a child, the diagnosis of a child with autism gives rise to an intense devotion to your child. The newborn and autism can become the center of your universe. Just remember, if you make this child the center of your life, you will lose those relationships with everyone around you. Make the needed adaptations. The road will be easier if you are not alone.
Kathleen G. Freeman, PhD, RNC-NIC, is adjunct faculty, in the Integrated Nursing Care of Autism Spectrum Disorders Certificate Program, Drexel University Online, College of Nursing and Health Professions. For more information, contact Dr. Freeman at Kgf35@drexel.edu or visit http://www.drexel.edu/cnhp/academics/post-baccalaureate/Certificate-PB-Integrated-Nursing-Care-of-Autism-Spectrum-Disorder/.
Ellis, J. B. (1989). Grieving for the loss of the perfect child: Parents of children with handicaps. Child and Adolescent Social Work Journal, 6(4), 259-270.
Gargiulo, R. M., & Graves, S. B. (1991). Parental feelings: The forgotten component when working with parents of handicapped preschool children. Childhood education, 67(3), 176-178.
Goodman, J. (2005). Becoming an involved father of an infant. JOGNN, 34(2), 190-200.
Hutton, A.M. & Carron, S.L. (2005). Experiences of families with autism in rural New England. Focus on Autism and Other Developmental Disabilities, 20(2), 180-189.
Naseef, R. A. (2013). Autism in the family: Caring and coping together. Paul H. Brookes Publishing Company.
Rubin, R. (1961). Basic maternal behavior. Nursing Outlook, 9(11), 683-686.