Our ATN center in St. Louis has developed a model system for integrating primary and specialist care for kids with autism
By pediatricians Matthew Broom and Susan Heaney and psychologist Debra Zand, of the Saint Louis University School of Medicine and SSM Cardinal Glennon Children’s Medical Center. Dr. Broom is the director of the center’s Danis Pediatric Clinic. The medical school and clinic are part of the Autism Speaks Autism Treatment Network.
As readers of this column know well, parenting is challenging and autism can add to its complexity. Your child may behave in ways you don’t understand. Being able to communicate with your child may be difficult. Your child’s healthcare and emotional needs may feel overwhelming.
At times like these, we need to turn to our children’s primary care providers for guidance and advice. Of course, we look to their medical expertise. But what we, as parents, take away from a pediatric medical visit also depends on the doctor’s empathic and insightful listening skills.
In our role as healthcare providers, we remain responsible for providing insight on a diagnosis and understanding of clinical findings.
But our role has evolved beyond that. This is particularly true when we are working with families of children who have autism. It’s especially important for us to serve as their sounding board and guide them through an often-complex medical system.
We believe our parents must feel validated, comfortable and supported when asking important questions around the issues swirling through their minds.
When families are facing a new diagnosis of autism, the power of the Internet affords unlimited – and to some extent, unfiltered – advice on behavioral management, outcomes, diet, research, vaccines, etc.
As doctors, we need to acknowledge concerns and questions, while also serving as a filter and advocate. We need to assist families in interpreting recommended practices, new research and other narratives that emerge in the media.
SSM Cardinal Glennon Children’s Medical Center’s Danis Pediatric Clinic is always striving for excellence in providing cutting edge services to all of our families. To do this, each interaction must be personalized to fit the family’s unique needs, cultural beliefs, family structure and social supports.
In addition to providing medical care, we need to ensure access to a wide range of other autism-related services. Doing this in the primary care doctor’s office is an important way to strengthen our relationship with the families we serve, while helping them build the resilience they’ll need to cope with the demands ahead.
Simplifying the path to complex care
To make this mission a reality, our pediatric clinic is developing an integrated, seamless system of care for children with autism and their families. We want to provide a “one-stop shop” in which families’ can have both medical and behavioral health needs met in an integrated fashion.
So we are blending the expertise of a wide array of professionals including physicians, psychologists, social workers, nurses, educators, interpreters and family navigators. By bringing these specialists together in one place, we’ve created family-care teams that can collaborate and coordinate to best meet each family’s needs.
Take for example a child with autism being seen by one of our pediatricians. During the course of that visit, the doctor can call in an autism-experienced psychologist or social worker. Together they can meet the family’s needs in a more informed and immediate way.
Our goal is to provide a prompt opportunity for the family to meet and arrange follow-up to address pressing concerns about their child’s behavior. This is particularly important when they need help with challenging behaviors such as hyperactivity, impulsivity and aggression. We know these behaviors can be incredibly frustrating for parents. They deserve speedy access to the best mental health providers who can provide them with the behavior management strategies they need to manage these challenges in a constructive manner.
Additionally, we understand that a visit to the physician can be stressful for children with autism. Many struggle with entering a strange place, having measurements taken and cooperating with a physical exam. Immunizations and blood draws can be particularly frightening.
This is why we have our pediatric psychologists at hand to provide consultation and assistance to the physician and family during their medical visit.
Reducing the wait for help
Our integrated care system has also allowed us to reduce the waiting time for families coming to us for their child’s first comprehensive autism assessment. We’ve tailored our electronic medical records to create “e-consults” in advance of that first in-person appointment. This process allows our team of specialists to provide families with early guidance well in advance of the appointment.
Trust grows when families are heard. Their health and quality of life improve when they are empowered by strong relationships with a diverse but coordinated team of healthcare professionals.
Developing and nurturing such confidence is not easy. The path each relationship takes is likely to include its own unique bumps.
In conclusion, we’ve found it takes a culture shift in the medical system to do what is most beneficial for our patients and families. With reflection and a clear mission, our practice is moving ahead.