Alice Carter, a Professor of Clinical Psychology at the University of Massachusetts Boston, has received a $3.9 million grant from the National Institute of Mental Health to lessen the disparities affecting undeserved children in receiving prompt referrals and diagnoses for an Autism Spectrum Disorder (ASD).
In partnership with early intervention programs and pediatricians, Carter and her team are focusing on earlier identification and increasing access to services to underserved communities with children with ASD in the Boston area. Areas such as Roxbury and Dorchester are significant locations among the list of underprivileged communities.
If a child in Massachusetts is diagnosed with ASD before the age of 36 months, they are eligible for autism specific intervention If caught before the age of four, the child has improved, long-term outcomes in development. This is especially true for language, as it is the best predictor of long-term function.
“Children with ASD are often detected later in bilingual households; people assume [the child] is not talking because [they] are learning two languages,” says Carter. “There is no evidence to support [that assumption].”
Her team practices health engineering, which uses qualitative interviews with the early intervention programs and teaches parents to learn how they can improve systems of care. They are trying to change how the early intervention programs screen for ASD, and that requires a lot of buy-in at multiple levels of the agencies involved.
“We need administrators to support this work as well as early interventionists and health care providers to be willing to screen the vast majority of their clients whether they are worried about autism or not.” states Carter.
Doctors need to be willing to refer a diagnostic evaluation for children even when they are continuing to be unconcerned, otherwise they will miss an abundance of cases. This can be solved with universal screening.
The higher the score a child obtains on a screener the more likely the screener is to be accurate in detecting ASD. However, for the screener to work efficiently, children whose scores are at or just above the threshold need to be referred for further evaluation.
Early intervention providers and doctors need to cast a wider net to catch all of the cases, even if they are going to refer children who do not have ASD. Educating pediatricians that excellent screening efforts require there to be some referrals that are wrong, or false positives, and that doctors should not be reprimanded for sending those referrals is essential to ensuring that ASD is detected early.
To broaden the possibilities for early detection of ASD, Carter’s team is asking early intervention programs to implement a two-stage screening process. Participating early intervention programs include Thom Boston, Harbor Early, and Bay Cove.
Universal screening lessens the disparities, and avoids attribution of environmental factors such as frequent changes in living situation, learning two languages, or chaotic households explaining away why children may have some of the red flags associated with ASD.
Part of the support Carter and her team give is for health care providers and is essential for its success. The conversation with families who have a child that has just been diagnosed with ASD can be a painful one.
“I’m one of the clinicians who sits with families and says the good news is that your child is eligible for more services, the bad news is that it is because he or she meets the criteria for ASD. It is never an easy conversation.”
The initial work of the project was developed in close collaboration with a graduate student, Frances de L. Martinez-Pedraza, who received funding from Autism Speaks to support the first phase of this work.
Both graduate and undergraduate students are involved, and the research is a definite opportunity for research capstone experiences for those interested in the field. The students involved develop a better understanding with the faculty, and all students are encouraged to contribute improvements or ideas.
Carter and her team from UMass Boston include: UMass Boston Assistant Professor of Psychology,Abbey Eisenhower and UMass Boston Assistant Professor of Early Education and Care in Inclusive Settings, Angel Fettig.
Dr. Carter’s team members from Tufts Medical Center and Tufts University include: co-Principle Investigator at Tufts Medical Center, Research Associate Professor of Pediatrics, Chris Sheldrick; Tufts Medical Center Professor of Pediatrics Ellen Perrin; Assistant Professor at the Tufts Institute for Clinical Research and Health Policy Studies, Thomas Mackie; Professor in the Tufts Department of Medicine, Pediatrics and Community Medicine and Public Health at Tufts University School of Medicine, Laurel K. Leslie, and Professor of Mechanical and Industrial Engineering and Director of Northeastern University’s Center for Health Organization Transformation James Benneyan.