Before a Diagnosis

Young girl with doll, provider and mom in background
As children grow, parents generally see them reach milestones, learn new things, and develop. When there is a concern about the child’s development or health, the parents or caregivers will usually notice it first, and then the child should be examined or evaluated by a doctor as soon as possible. Evaluations and screening will be used to determine if there is an issue and also to rule out conditions. It is important for families to understand the screening and diagnostic process and that it is something the child’s primary care clinician can help them through these steps. Subtopic pages included under “Before a Diagnosis” are:

Identifying and Diagnosing Problems

Early identification of medical, developmental, sensory (vision or hearing), and mental health problems in children can allow early care and better results for those children and their families. Key roles of a child’s primary care team (his or her medical home) are listening to parents’ concerns, watching for signs or symptoms, and screening for problems that have yet to result in signs or symptoms.

When a problem is suspected because of parental worry or a screening test’s results, further testing, exam, visits with specialists, or even hospital stays may be the next steps.

Suspecting and then finding a developmental or medical health problem and its cause in a child is straightforward for some patients and families, but for others it may not be easy. The diagnosis could take a long time, and might need a lot of testing and experts’ views. For a few children, a diagnosis may not be found or may need to wait for new scientific discoveries.


Information & Support

For Parents and Patients

Family Voices (FVAO) or Health Information(F2F) Center
Family-to-Family Health Information Centers are nonprofit, family-staffed organizations that assist families of children and youth with special health care needs (CYSHCN). Locate state-based F2F HICs, providing support, information, resources, and training.

Family Voices
A national, nonprofit, family-led organization promoting quality health care for all children and youth, particularly those with special health care needs. Locate your Family-to-Family Health Information Center by state.

Parent Training and Information Centers (PTI)
Provide training and information to parents of infants, toddlers, children, and youth with disabilities and to people who work with parents to enable them to participate more fully and effectively with professionals in meeting the educational needs of their children with disabilities. See the link for Download a List of Parent Centers across the USA to find the parent center in your state; U.S. Department of Education.

Find Your Parent Center
Parent Centers provide education and referrals for families with a child who has a disability, as well as the professionals who work with them. There are almost 100 Parent Training and Information Centers (PTIs) and Community Parent Resource Centers (CPRCs) in the US states and Territories; Center for Parent Information & Resources.

Learn the Signs Act Early (CDC)
Offers many tools, videos, lists, learning materials, and a developmental Milestone Tracker app (ages 2 months to 5 years); Centers for Disease Control and Prevention.

Services for Patients & Families Nationwide (NW)

For services not listed above, browse our Services categories or search our database.

* number of provider listings may vary by how states categorize services, whether providers are listed by organization or individual, how services are organized in the state, and other factors; Nationwide (NW) providers are generally limited to web-based services, provider locator services, and organizations that serve children from across the nation.

Authors & Reviewers

Initial publication: January 2013; last update/revision: January 2022
Current Authors and Reviewers:
Author: Chuck Norlin, MD
Authoring history
2013: first version: Tina PerselsR
AAuthor; CAContributing Author; SASenior Author; RReviewer