Approximately 1 in 6 children in the United States had a developmental disability or a chronic physical, behavioral, or emotional condition that placed them at risk for developmental disability in 2008.1 These data also show that the prevalence of these disabilities increased by 17.1% from 1997 to 2008. The trend is even greater for autism. In a study of 8-year-old children in Atlanta, GA,2 the estimated prevalence of autism spectrum disorder increased 269% from 1996 to 2010, an average increase of 9.3% each year.
Overall, the prevalence of any developmental disability was 13.9%. This includes the following prevalence percentages1:
- Learning disabilities, 7.7%
- Attention deficit hyperactivity disorder (ADHD), 6.7%
- Other developmental delay, 3.7%
- Autism spectrum disorder, 1.47%.
Despite the high prevalence of these disabilities, many children are not appropriately diagnosed and treated. More than 30% of parents referred to professionals reported that help was not offered for their children’s developmental disorders.3
Early identification through screening and surveillance is crucial because it enables early intervention, which improves outcomes for children with developmental disorders. Identifying a developmental disorder is the initial step in evaluating the disorder. It permits access to disease-specific intervention, and it helps parents understand their child’s needs.
Identification also allows for reproductive counseling. For example, if a child has an autism spectrum disorder, the parents can be informed about their risk of having another child with the disorder. Siblings of these children have increased risks of a learning disorder. Finally, early identification allows access to free behavioral intervention though the Individuals with Disabilities Education Act, parts B (school-aged children) and C (36 months and younger).4
Ongoing surveillance is advised in addition to screening for developmental disabilities.5 Surveillance is a flexible, continuous, longitudinal process performed at every well-child visit and aimed at identifying concerns. Screening involves administering a brief, standardized tool normalized for specific ages and stages of development to identify any concerns.
The components of developmental surveillance include the following5:
- Eliciting and addressing parents’ concerns
- Obtaining a developmental history by asking about developmental changes since the previous visit and requesting age-specific information (eg, whether the child is pointing or walking)
- Making accurate developmental and behavioral observations on fine and gross motor skills, speech and language, and social engagement
- Conducting a neurologic examination
- Identifying environmental, genetic, biologic, social, and demographic factors that present potential developmental risks or protection
- Maintaining an accurate record of documenting the process and findings.
The developmental history should note milestones and any delay, deviation, or regression from standard development expectations. Specific patient risk factors such as preterm birth, prenatal substance exposure, seizures, and growth abnormalities should be documented. Family risk factors including parental mental health, developmental disorders, or history of substance abuse should be recorded.
Developmental patterns should be assessed at each visit and classified as normal, delayed (normal sequence but slower rate of acquisition skills), dissociation (delay in one area of development but not others), deviance (achievement of milestones but not in the typical sequence, such as occurs with cerebral palsy), or regression (loss of previously acquired skills or a slowing or cessation of acquiring new skills).
Surveillance should note any abnormalities of body posture, patterns of movement, and muscle tone. Surveillance also should include looking for stereotypic movements like hand flapping, rocking, pacing, spinning, toe walking, and repetitive behaviors (such as overly repetitive play). Eye contact should also be assessed. For example, does the child initiate eye contact, make only selective eye contact, or avoid eye contact?
Verbal and nonverbal communication should be assessed when observing how the child interacts with the physician and family members. Does the child use gestures such as pointing appropriately? Children with deficits in symbolic language, such as those with autism spectrum disorder (speech, gestures), may use hand-over-hand communication such as leading a parent by the hand or placing a parent’s hand on what they want. Tantrums also can occur in children with developmental disabilities who lack more appropriated ways to communicate.
Behavioral observation includes scrutinizing engagement, impulsivity, and attention span. Tantrums, irritability, oppositionality, unusual fearfulness, and anxious, sad, or flat affect are warning signs of potential developmental or behavioral disorders. Facial expressions should be appropriate to the circumstance.
All infants, toddlers, preschoolers, and early elementary-aged children should be screened at regular intervals. Older school-age children with developmental concerns or who are struggling in school may require testing by a psychologist.
The American Academy of Pediatrics (AAP) recommends routine developmental screenings for specific disorders at ages 9, 18, and 30 months (or at 24 months if a 30-month visit is not planned).5 The screening at 9 months is intended to uncover potential vision and hearing problems, cerebral palsy, and other neuromotor disorders. At 18 months, screening can help identify cerebral palsy, autism spectrum disorders, global developmental delays, and specific language disorders. Screening for autism, global developmental delays, and specific language disorders should be repeated at the 24- or 30-month visits. In addition, AAP recommends an academic readiness assessment at age 4 to 5 years.
Development also should be screened whenever a parent expresses concern. Parental concerns about a child’s speech, language, behavior, or other development have a sensitivity and specificity in detecting developmental deficits that approximates those of commonly used screening tools.3 The message is to act immediately if a parent expresses a concern. If a parent is not concerned, continue with routine surveillance and scheduled screening.