Background on the Project
Research indicates that children with ASDs are not diagnosed, on average, until 13 months after their initial screening by a qualified professional (Wiggins, Bajo & Rice, 2006). This is in part due to lengthy waiting lists for diagnostic evaluations, which ultimately delay entry of children into services. Further, idiosyncratic diagnostic evaluations lead to the need for the replication of an evaluation and unnecessary cost and time expenditure, as well as increased worry for parents when both false positive and false negative diagnoses are generated. In order to streamline the diagnostic evaluation of children with suspected ASDs, states have developed standardized yet flexible approaches to evaluating children and have defined acceptable approaches to diagnosis within their state. The Centers for Disease Control and Prevention have developed Autism A.L.A.R.M. Guidelines, which provide a surveillance and screening algorithm and lay the foundation upon which the work of the Connecticut team will be based. In addition, Missouri and California have convened working groups to define best practice within the context of existing resources so that children who qualify for ASDs diagnosis can move quickly into receiving intervention.
In 2007, a partnership was formed between the National Center on Birth Defects and Developmental Disabilities (NCBDDD) at the Centers for Disease Control and Prevention, the Maternal and Child Health Bureau (MCHB) at the Health Resources and Services Administration (HRSA) and the Association for University Centers on Disabilities (AUCD) to implement the “Act Early” Regional Summit Project. The vision of the project, supported by the Learn the Signs Act Early Campaign and the Combating Autism Act, was to bring together leaders from the early intervention and early childhood community for the purpose of enhancing relationships and collaborations between key leaders in the state.
Developing Best Practices Guidelines
The Act Early Connecticut Best Practices group intends to engage in the following activities toward the development of diagnostic guidelines: convene a legislative forum, develop a draft document of the proposed guidelines, disseminate the draft guidelines to an expert panel, including members of the Act Early Connecticut Team, and print and distribute the guidelines.
As a result of developing best practice guidelines for a diagnostic evaluation of ASDs that is recognized and implemented by providers, the care of children with developmental delays will be streamlined. With children more accurately diagnosed at an earlier age, access to intervention should occur in a more timely fashion.
Raising Awareness of the Need for Early Screening, Diagnosis and Intervention
The Awareness Team’s efforts have centered on disseminating the CDC "Learn the Signs, Act Early" campaign materials at conferences and through a targeted mailing campaign. Materials from the CDC on recognizing developmental delays along with Connecticut-specific information will be sent to core groups throughout the state: medical providers, licensed family day cares, and licensed group day care centers, including nursery schools.
Data provided by the State Department of Heath indicates that there are 2,687 Family Day Cares and 1,589 Group Day Cares, for a total of 4,276 facilities. This represents a total of 113,734 children potentially being served with information on early identification of developmental delays in Connecticut. Data on whether additional material is requested will help to determine the effectiveness of the process and indicate whether further targeted mailing should be implemented. With children accurately identified as potentially at risk, access to early intervention might decrease the long term effects of any delays.
Connecticut Guidelines for a Clinical Diagnosis of Autism Spectrum Disorder
Download the brochure, "Connecticut Guidelines for a Clinical Diagnosis of Autism Spectrum Disorder"