Teenage or adult-onset diagnosis

Getting a Diagnosis

Introduction: Diagnosis before birth / Diagnosis at birth or soon after / Diagnosis in the infant years / Teenage or adult-onset diagnosis / Undiagnosed conditions

Teenage or adult-onset diagnosis

This refers to conditions which are often present in the person, but the symptoms do not appear till the teenage or adult years. They pose a unique set of problems for diagnosis and a whole new set of issues for the person and their family. In some cases it is possible to test for them in infancy, but the accepted wisdom is that testing of such conditions should not occur in childhood, unless symptoms are likely to appear in childhood, and there is also some treatment or intervention that is available. It is considered in the child's best interest that they enjoy a childhood free of that knowledge, and deal with any adult problems when an adult.

The emotional issues will still be significant in circumstances where a diagnosis arises for a teenager or adult, and there will be different dimensions to issues faced by families with a newly diagnosed baby. The young adult will need support and opportunities to deal with their feelings, as will the parents.

Other aspects of later diagnosis revolve around the fact that regular medical care is likely to be from a General Practitioner. As general practices often have a primary focus on symptom management, there may be some delay till an appropriate referral to a specialist occurs. We suggest you raise the issue of a specialist referral with your doctor, if problems are persistent.