There are several parts to any autism evaluation at the Thompson Center for Autism and Neurodevelopmental Disorders. Our providers gather and review information about the patient’s history. They interview the parents and the child. They observe the patient playing and administer a diagnostic screening tool. Information gathered from all of these sources is analyzed by a dedicated team to determine if and what diagnosis is appropriate.
This involved process is often made more challenging when the patient is a child in the foster care system. The average foster child is placed in an average of three households, but can range from 1-16 placements. Lack of continuity makes it difficult to keep track of records, follow through with scheduled appointments, stay in touch with healthcare providers, and observe long-term patterns of behavior and socializing. Foster children typically have more medical needs compared to their peers because of lack of screening and delayed treatment. All of these factors can contribute to a delayed diagnosis or a misdiagnosis. In some cases, our providers have found that foster children often come to our clinic with a diagnosed attachment disorder, while the underlying cause of attachment problems and other issues is actually autism.
There are more than 400,000 kids in foster care in the United States and more than 20,000 in Missouri; the majority of these children are placed in the system because of neglect. Kids with disabilities are three times more likely to experience abuse and neglect, and therefore are more likely to end up in the foster system.
Because of the high demand for neurodevelopmental evaluations for kids in foster care and the complexity of their cases, the Thompson Center launched its Foster Care Clinic as a pilot program in June 2022. On the surface, these appointments are similar to any other autism evaluation; providers review files and records, interview involved parties, and observe the child. However, appointments for this clinic typically require much more preparation before the appointment. Our providers spend an average of eight hours compiling and analyzing information for foster children, as opposed to just one hour to prepare for most other evaluations.
To simplify the process of gathering needed information, the Thompson Center put together a checklist of Children’s Division forms and other documentation that would have relevant details about a foster child’s history. The Thompson Center team that created this checklist and developed the protocol for the Foster Care Clinic included specialists in the areas of psychology, neuropsychology, social work, nursing, developmental pediatrics, occupational therapy, speech/language therapy, and applied behavioral analysis. They collaborated with Children’s Division, judges, guardians ad litem, juvenile officers, biological and foster families, ParentLink, the MU Department of Human Development and Family Science, patients, and others to be sure that all perspectives were considered in the process.
Multidisciplinary evaluations are the standard at the Thompson Center, but the approach is especially helpful for our patients in foster care. Looking at a case from multiple perspectives can help fill in gaps where information is missing from a child’s history. The team recently evaluated a young child whose scores on several tests were highly inconsistent over time. A provider specializing in neuropsychology on the team recognized that this was not indicative of autism, but rather a brain injury. They were able to refer the patient for an MRI to explore the injury further.
The Foster Care Clinic pilot program is currently scheduled to evaluate two patients per month with plans to double that capacity in 2023. When a formal waitlist is created for this program in August, the team expects to have 50-70 potential foster care patients from the existing autism evaluation waitlist. The Thompson Center will be seeking grant funding to offset the costs that are unique to these special cases, since insurance reimbursements do not factor in the additional time it takes to obtain and review files from Children’s Division.
The vision for the Foster Care Clinic goes beyond conducting evaluations. The team hopes to add a research component that will help answer questions about rates of diagnosis for autism and other neurodevelopmental disorders and best practices for foster care populations. The existing research in this area is scarce because it is often difficult to obtain consent for foster children to participate in studies. Additionally, the Thompson Center plans to train other autism service providers and therapists across the state in strategies for serving children in the foster care system and collaborate with them to continue care in their local communities for those who receive a diagnosis at the Thompson Center.