Now Available For Families – Baby Siblings Research Consortium Publishes Guide on Clinical Assessment of Infants

In May, the journal Pediatrics published an article authored by members of Autism Speaks' High Risk Baby Siblings Research Consortium (BSRC) to expand on the American Academy of Pediatrics (AAP) recommendations on evaluation by primary care providers [1] of 18 and 24 months olds with suspected autism spectrum disorders (ASD), and is part of an ongoing effort of the BSRC to share research findings with the clinical community. By focusing their research on detecting the earliest signs of autism in high risk infants (younger siblings of children with autism), BSRC investigators have gained important insights about assessment and treatment issues that place them in a unique position to provide guidance on how to follow through with current AAP guidelines.

With the understanding that there are unique challenges to apply current diagnostic guidelines to children under the age of two, the authors addressed the following questions: 1) What do we know about the early signs of ASD? 2) Can ASDs be detected in children younger than 2 years by primary care providers? 3) What is the current best practice for diagnostic assessment before 2 years of age? 4) What are the challenges in establishing ASD diagnoses in this age group? and 5) What interventions can be offered to children either suspected or confirmed to have ASD?

The paper, titled "Clinical Assessment and Management of Toddlers With Suspected Autism Spectrum Disorder: Insights From Studies of High-Risk Infants," outlines several early signs of autism that physicians and other health care providers should be aware of, and also identifies potential screening tools that may be used to detect early behavioral indicators. Of equal importance, the authors address the challenges that primary care providers face in communicating the meaning of these early signs and symptoms. In order to provide resources for doctors who may identify children showing these signs, the authors also make recommendations on how to approach assessment for possible ASDs in infants and toddlers . They emphasize the importance of evaluating the infant on multiple domains, with the input of parents and experienced clinicians. This paper also acknowledges the challenges associated with managing uncertainly about diagnosis in some young children, weighing the risks and benefits of early detection with possible misdiagnosis.

While studies by the BSRC investigators are still underway, the authors also take care to outline potential early intervention strategies to target particular behavioral deficits associated with these early signs. They include a focus on communication, joint attention, and social and play skills, customizing these to the needs of each child. In addition to helping pediatricians understand the needs of a child with early warning signs under the age of 2, the paper was meant to help support parents with questions about the development of their own child. Therefore, Autism Speaks has received special permission to provide families with the complete text of the article. The full text of the article can be found here [2].

Lead author Lonnie Zwaigenbaum, M.D., Co-Director of the Autism Research Center at the University of Alberta, Canada, emphasized the need for dissemination of best practices by the leading thinkers in the field by saying "This publication represents the BSRC's commitment to translating research findings for rapid uptake into clinical practice. The group spent a great deal of time discussing and debating the issues outlined in the paper. We feel that the recommendations made in this report will help physicians provide the most appropriate care and referral decisions for children under 2 for whom they suspect a diagnosis autism. We hope that making this article available to the public will help guide parents as well as primary care physicians though the difficult issue of early detection and early intervention."