Medical View

The Purpose of a Diagnosis

For many families, receiving a diagnosis of cerebral palsy (CP) can be a positive first step in determining how to move forward and support their child. For other families, a diagnosis of CP can be an intimidating and disheartening experience. As a parent you may not know what to expect and the "world" of CP can be overwhelming and challenging to understand. It is important to realize the place and purpose of a diagnosis- it is a tool to help plan for treatment and management. When your doctor gives your child a diagnosis of CP it is to help you access therapies and other services to help improve your child's quality of life and functional capabilities. A diagnosis does not define a person, it is simply a tool.

The History of the CP Diagnosis and Definition

Medical Professionals and researchers have been trying to formulate a definition of cerebral palsy for over 150 years (Morris, 3). In fact, the famous psychoanalyst Sigmund Freud even attempted to define CP and was one of the first people to indicate that it is almost impossible to know if CP is the result of birth trauma, or a predisposing factor for a difficult birth. Freud also noted that it is generally unhelpful to classify cases as being either congenital (before birth) or acquired (after birth) (Morris, 4). The fact that every individual with CP is unique has meant that a universal definition and classification system has remained elusive. CP has become the focus of treatment services, advocacy and research efforts- all of which can help to improve the quality of life and inclusion for people with CP (Rosenbaum, 8). Despite the personal benefits of obtaining a diagnosis of CP, after 150 years of debate, " we do not yet have a universally accepted definition of CP; nor do we have an agreed method for classifying the impairment" (Morris, 6).

Where are we Now?

Though the medical establishment recognizes that they do not yet have a universally accepted definition of CP, they do have a interim definition and guidelines for how to diagnose CP. This definition and classification is a tool used to establish treatment and management goals, track the number of people with CP, provide a description of the individual in question, and to compare cases and evaluate changes within the same individual at different points in time:

"CP describes a group of permanent disorders of the development of movement and posture, causing activity limitation, that are attributed to non-progressive disturbances that occurred in the developing fetal brain. The motor disorders of cerebral palsy are often accompanied by disturbances of sensation, perception, cognition, communication, and behavior, by epilepsy and by secondary musculoskeletal problems" (Rosenbaum, 9-11)

In 2006, a group doctors who specialize in CP formed an executive committee to try and lay out a working definition (above) and establish simple guidelines to help classify people with CP. These guidelines are considered the current 'best practice' for diagnosing CP, but they have not been universally adopted. When your doctor is diagnosing your child with CP, several components may be taken into consideration. These areas of interest will help your doctor to determine if your child should be diagnosed with CP or not. They are as follows:

  1. Motor Abnormalities
    • usually tested using the "Gross Motor Function Classification System" / GMFCS
  2. Accompanying impairments
    • seizure disorders, hearing and vision, cognitive and attention deficit, emotional and behavioral issues, musculosketetal problems
  3. Anatomical and neuro-imaging findings
    • only used where and when it is available
  4. Causation and timing
    • only be noted when there is reasonable and firm evidence
(Rosenbaum, 12)

Concluding Notes

As a parent, it is your responsibility to take what you learn from your doctor and other health care professionals and use that information with the best interests of your child in mind. No one has the authority to tell you that certain therapies are required or not- it is your unique privilege as the parent of a child with CP to decide what interventions are best. Remember that the diagnosis of CP should be an empowering tool to help you plan for the future and to access services for your child. All people share similar needs, desires and goals. Children with CP should always be treated as children first.

To find out more about the types and causes of Cerebral Palsy please see our Guide to Cerebral Palsy.

References

Rosenbaum, Peter et al. (April 2006) Definition and Classification of CP. Center for Childhood Disability Research, Hamilton Ontario.

Morris, Christopher. Definition and Classification of CP, A Historical Perspecitve. Department of Public Health, University of Oxford.