Case Study Part IIB: A Closer Look

What are the challenges for the PCP in discussing this difficult diagnosis with this family?

A boy playing with his toys
  • Assisting the parents in processing a potential emotionally upsetting diagnosis
  • Explaining medical terms, such as “Autism Spectrum Disorder,” and the levels in a manner that parents will understand
  • Parent concerns that their child wasn’t accurately evaluated and disagreement with the diagnosis
  • Parental questions about causes of ASD and over-diagnosis or “labeling” of children
  • Guiding parents to see the value of early intervention and assisting them in making wise choices about alternative therapies and testing

What are the challenges for the PCP in discussing this difficult diagnosis with this family?

A mom and her daughter
  • Understanding complex information about Tommy’s diagnosis and next steps
  • Fear for Tommy’s future
  • Differentiating evidence-based medical information
  • Concern about Tommy being “labeled”

What are the stages of grief for parents learning of a disability in their child?

Stages 1-3

Shock and distress at hearing bad news: Parents need to feel comfortable expressing their emotions to the PCP. If parents are embarrassed to express their emotions, they are less able to attend to the information.

Denial: Can be a useful defense mechanism for parents mastering the new information; however, prolonged denial impedes adaptation.

Anger: In a natural response to loss of the expected typical development of their child, parents often ask, “Why is this happening to us and our child?” It is important parents are provided an outlet to express anger, rather than turn it inward. Be aware that anger may be directed at you as the messenger, and try not to take it personally.

Stages 4-6

Bargaining: Parents often hope that with lots of intervention, their child will be “normal.” Parents may think they can “cure” their child of ASD if they engage in certain therapies, and sometimes are willing to spend considerable of resources toward that goal.

Grief: Grief when parents start to worry about the child’s development. Grief for parents of children with ASD is cyclical: renewed grief can occur with each developmental milestone that is not met and with each life event that does not go as the parents had expected (e.g., the first day of kindergarten, the day the child would have been confirmed in a religious faith, etc.) Chronic grief occurs over time as the demands of raising a child with a disability mount.

Acceptance: Most parents will eventually make some kind of peace with their child’s disability, but grief and acceptance can alternate over time. Acceptance does not imply that parents are not bothered by their child’s disability, but that they accept it as a reality of their lives.

Discussion

These stages are not necessarily linear, and parents will move from one to another. Two parents may not be in the same stage at the same time. These stages have been adapted from those of Elizabeth Kubler-Ross, who described stages of grief in dying persons. In this case, parents are grieving the loss of their expectation of raising a typical child, the apparent loss of their child’s potential, and other losses known and imagined. Differences for families who have a child with a diagnosis of ASD include:

  1. There is no “end,” as there is in a terminal illness
  2. There is much uncertainty for each child with ASD, creating stress for parents
  3. Most parents receive the diagnosis when the child is relatively young, and they cannot anticipate what the future holds for them
  4. There is not always a clear-cut treatment modality that is known to work in all cases
  5. In the case of a child with a developmental disability, grief is more likely to become chronic

Did you note any jargon used by the pediatrician that might not be understood by the parents?

Holding hands
  • Autism Spectrum Disorder or ASD
  • Early Intervention (EI)
  • M-CHAT-R/F