The Autism Speaks ATN center in Rochester, NY, has pioneered a program to identify and support children with autism in foster care
By pediatric nurse practitioner Lynn Cole, associate director of clinical services at the University of Rochester’s Division of Neurodevelopmental and Behavioral Pediatrics. The University of Rochester is one of 14 Autism Speaks Autism Treatment Network (ATN) centers across North America.
As many readers of this column know, one of the ATN’s major goals is outreach to underserved communities. Our sites have developed innovative programs to advance this mission. Outreach programs at the University of Rochester include one with a special focus on children in foster care.
Here in Monroe County, New York, we have about 1,100 children in foster care at any one time. More than 10 percent of these children have diagnosed developmental disabilities, including autism. The true percentage may be higher because, as a group, we know that these children are both at high risk of autism and tend to be diagnosed later than children in more stable living situations.
Children in foster care are at high risk for developmental disabilities for a number of reasons. This includes high rates of prenatal exposure to alcohol and overall poor access to prenatal and infant care prior to entering foster care. This same poor access to early healthcare helps explain delays in their evaluation and diagnosis for autism. Complicating matters still further, many of these children have other behavioral disorders that can mask autism symptoms.
It’s also a hard truth that neglect and abuse in the home are major reasons for entering foster care. Compounding this heart-breaking situation, having a developmental disorder such as autism increases the likelihood that a child will be neglected or abused. Bottom line: a disproportionate number of children with developmental issues end up in foster care.
An autism-friendly medical home
We are fortunate that Monroe County has a primary care medical home designed specifically to meet the needs of children and teens in foster care. The staff at Starlight Pediatrics has expertise in the legal, medical and social needs of foster children. They focus, in particular, on understanding the developmental and behavioral effects of childhood trauma.
Their primary-care team includes pediatric nurse practitioners, a pediatrician, registered nurses, social workers and case workers. They are so awesomely committed to the foster-care kids in their care. And this energizes us – the staff of our ATN site – to work closely with them to meet the needs of these children. We do this in three primary ways:
1. We provide educational workshops and ongoing consultation to the primary-care team. In this way, we’ve helped increase their expertise in early identification of autism and management of autism-related health and behavioral needs. We’ve found it so exciting to see how the Starlight team has become unfailing in implementing the developmental and autism screenings recommended by the American Academy of Pediatrics.
2. We travel to their clinic to provide on-site diagnostic evaluations of children they’ve identified as possibly having autism.
3. We also go to their clinic to provide on-site specialty care for kids already diagnosed with autism. We work with the Starlight team to assure that these children get the educational and behavioral services they need. We also help address their autism-related health issues and provide professional guidance on behavioral medication.
As part of our on-site visits, we often work directly with foster families to help them understand their child’s disability. Though many foster families have considerable experience caring for children with developmental disorders, they greatly appreciate help understanding and addressing each child’s particular needs.
Both the Starlight healthcare team and its foster parents have enthusiastically embraced several Autism Speaks ATN/AIR-P tool kits – which we provide to them on flash drives. They are using them to manage common autism-related health issues such as chronic constipation and sleep disturbances. (All these tool kits are available for free download on the Autism Speaks website, here.)
Special challenges to diagnosis
I go to the Starlight’s foster-care clinic every month or two to conduct autism evaluations. While any autism evaluation can be challenging, I’ve found that these children have some very special needs. Many of them have attachment problems related to early neglect. Some have seen and experienced extreme violence. It can be difficult to sort out issues related to these traumas from symptoms indicating autism.
Diagnosis can be made even more difficult when biological parents aren’t available to answer questions about a child’s early development.
And special rewards…
One of the most rewarding aspects of this work is meeting these wonderful children and the foster families who care so deeply about them.
Two kids and their guardians come immediately to mind. One was an inner-city teen with autism. His uncle was preparing to adopt him, though he’d not been a part of the boy’s early life due to his own struggles with addiction and incarceration. During our first visit, the uncle told me, “I just want to learn how to help my nephew be as happy and independent as he can be.” Together, we made a plan to help his nephew learn the skills he needed to care for himself at home. We also identified some enjoyable activities they could share to be more active in the community.
I also think a lot about a certain 2-year-old and his foster mom. The medical team was concerned that he still wasn’t speaking and that he showed multiple warning signs for autism. Initially, his foster mother resisted any suggestion that something was wrong. She liked his preference to play quietly by himself. But she was concerned about his tendency to escape from the house.
A thorough evaluation made it clear that this toddler had autism. The good news is that the diagnosis completely changed the foster mom’s attitude. She enthusiastically learned how to use early intervention techniques and welcomed our help in understanding how she could best work with her foster son. This foster mom became one of the best teachers and advocates this child ever had!
All these activities have taken place outside the doors of our ATN center at the University of Rochester. I think they’re a wonderful demonstration of how our ATN center is helping to improve the lives of all children with autism throughout our region.