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How to Smooth the Rocky Road As Children with Neurodevelopmental Disorders Transition to Adult Neurology

Article In Brief

Pediatric neurologists and other specialists who work with children with intellectual and neurodevelopmental disorders discuss the challenges of transitioning them to adult neurology care. And they offer strategies for managing sometimes difficult to manage behaviors as these children grow into their teen and young adult years.

When children with chronic medical conditions approach their teenage years, it typically becomes time for the pediatric specialist or subspecialist (or interdisciplinary team) to work with the child and their parents to help plan the transition to an adult specialist or program. A young person with a congenital heart condition, for example, transitions to an adult congenital heart program. Youth with diabetes transition to adult diabetes specialists. These transitions may not always go as smoothly as might be hoped, but in most cases, there is an established adult specialist on the other end of the move—a place to land.

That's not necessarily the case for young people with neurodevelopmental and intellectual development disorders such as autism spectrum disorder, cerebral palsy, fetal alcohol syndrome, attention deficit disorders, seizure disorders, oppositional defiant disorder, and Down Syndrome.

In childhood, these individuals are often managed by pediatric neurologists. But as they mature—just as they lose access to school-based services, as disruptive and harmful behavior often worsens, and as young people often become physically larger and stronger than their caregivers—they move into an adult medical world that doesn't have a specific place for them.

“There isn't an obvious adult provider,” said Jessi Solomon Sanders, MD, assistant professor at the University of Colorado and director of the Transition Clinic in Developmental Pediatrics at the Children's Hospital of Colorado and in Behavioral Neurology at University of Colorado Hospital in Denver. “If someone has been managed for 18 or 21 years by a developmental pediatrician, there is no adult counterpart for the pediatrician to say, ‘Here, across the street in our adult hospital, you can go to see this person.’”

In a recent survey of over 2,000 families of children with these disorders, conducted by the Child Neurology Foundation, more than 50 percent reported experiencing disruptive or harmful behavior at least once a week, and in 92 percent of cases, behavior management medications were prescribed by a child neurologist rather than a child psychiatrist. But adult neurologists are not necessarily prepared to take over where child neurology ends.

“If I'm transferring the care of a young adult patient with a seizure disorder, there are plenty of adult neurologists who are comfortable treating seizures,” said David W. Dunn, MD, Arthur B. Richter Professor of Child Psychiatry, professor of child neurology and psychiatry, and director of the division of child and adolescent psychiatry at Indiana University School of Medicine.

“But the hardest group of all is the young adults with intellectual disabilities, who have neurologic issues and behavior problems combined, because adult neurologists are often not comfortable handling behavioral difficulties while adult psychiatrists are not as comfortable handling people with complex medical problems.”

“I think collaboration between child and adult neurology in the care of these individuals is necessary,” Dr. Sanders said. “These disorders involve the brain, and we should take ownership as doctors who specialize in the brain. It's true that often the resulting issues are not entirely neurologic, and we need support from government and community agencies and collaborations with other service providers, but their care can and should be housed with adult neurologists whenever possible.”

Gaps in Training

Unfortunately, there is currently no established program of training for adult neurologists in the management of adults with neurodevelopmental disabilities and behavioral issues, said Seth Keller, MD, FAAN, a neurologist in private practice with Advocare Neurology of South Jersey, chair of the AAN's new Section for Adults with Intellectual and Developmental Disabilities and past president of American Academy of Developmental Medicine and Dentistry.

“We do get psychiatric and psychological training to a degree, but it's very superficial. In our adult neurology residency and fellowship programs, there's really no education about these issues. The vast majority of adult neurologists are not trained or comfortable dealing with behavioral issues and focus more on specific neurologic manifestations such as seizures or spasticity. That's where they feel comfortable.”

Some academic health systems have begun establishing transitional care programs within neurology to support the care of adult patients with neurodevelopmental disabilities. Launched in September and housed in the department of neurology's section on behavioral neurology, Dr. Sanders' clinic is one such program.

“Each neurologist in the section is a specialist in behavioral neurology and has a different focus, such as Parkinson's disease or Alzheimer's disease. I am bringing my expertise in developmental disabilities as a facet of behavioral neurology, seeing my own patients as well as serving as a resource for the adult system when they have challenging patients with developmental disabilities. Residents and fellows will be rotating through, and we also have support from nursing and social work.”

Prior to moving to Colorado, Dr. Sanders completed her residency in neurodevelopmental disabilities Boston Children's Hospital, a program which encompasses pediatrics, neurology, child neurology, and developmental medicine in six years of training. There, she led a similar clinic—also new—within the cognitive neurology unit at Beth Israel Deaconess Medical Center.

“That unit also typically cares for people with behavioral and cognitive neurology issues, but previously did not specifically include people with developmental disabilities. We established that line of care there, and now there is a new resident leading that clinic with the support of attending physicians.”

Finding Partners

But such programs are still relatively rare. For the practicing adult neurologist—in private or group practice or in a hospital or health system that does not have a program invested in the care of adults with neurodevelopmental disabilities—what should they know about managing the care of these individuals and their associated behavior challenges?

Neurologists without specialized training may need to partner with professionals who do have experience in managing behavioral issues, especially for severe and challenging behaviors, said Nathan Call, PhD, clinical director of the Marcus Autism Center and associate professor in the department of pediatrics at Emory University School of Medicine.

“Get to know the local behavioral service providers and become familiar with their experience,” he said. “Don't just make an assumption that everybody has the right kind of experience in working with behavioral issues. Ask them if they have worked with adults, specifically adults with serous challenging behaviors. Ask what kind of functional assessments they are familiar with conducting. That can give you more insights as to whether they're ready to team with an adult neurologist on managing these patients.”

Where to find such professionals? Dr. Call suggests starting with your state's resources. “In Georgia, we have what is called the Department of Behavioral Health and Developmental Disabilities, for example. They have centers around the state and a crisis rapid response team. People with this kind of training are part of those teams. That's a good place to start.”

Dr. Sanders also recommends reaching out to pediatric providers in your area. “They often have a good handle on behavior management plans where adults may not and can help you understand positive behavioral support, antecedent behaviors and consequences, and functional behavior analysis principles.”

Adults with neurodevelopmental disabilities will take more time compared with other general neurology patients, said Benjamin A. Margolis, MD, a psychiatrist and neurologist specializing in behavioral management in adults with neurodevelopmental disabilities.

“You really need to find out about who this patient is as a person, what their life is like, who their family is,” Dr. Margolis said.

“Get to know the people who can give you that information. The roles of the care providers in the developmental disability world aren't necessarily obvious, and the general neurologist won't always know the difference between all the different people who care for the person: the direct support professional, the house manager, the site supervisor. We may rely on the person bringing the patient to the appointment, we often need to go a lot deeper.”

Avoid “Diagnostic Overshadowing”

Adult neurologists working with these patients must develop comfort dealing with behavior. “That means picking up the phone and talking to the psychologist or the social worker dealing with the individual or the family,” Dr. Dunn said. “It's not a 30-minute visit and you're done. You're talking to multiple people and it extends the time involved.”

Before prescribing a medication to address a challenging behavior, the adult neurologist should consider whether what is happening represents a behavioral issue, a neuropsychiatric issue, or both. “Before you prescribe a medication for something that is primarily a behavior, find out what the behavior is accomplishing,” says Dr. Margolis. “Because it may very well be that someone has learned that through a problematic or maladaptive behavior, they are getting their needs met.”

In these situations, the neurologist, or any medical specialist, may default to “diagnostic overshadowing”—attributing the behavior to the primary developmental disorder, such as Down Syndrome or cerebral palsy, rather than to an underlying problem such as pain that they are having or difficulty communicating, or an uncomfortable psychosocial issue. “Instead of doing more digging to uncover what the problem is, we may treat the behavior pharmacologically, particularly because of the lack of education for adult neurologists about treating behaviors,” Dr. Keller said.

Dr. Sanders noted that the neurologist caring for adults with neurodevelopmental disabilities may have to become comfortable with less certainty. “Medicine is used to evidence, protocols, guidelines and the ‘right way’ to do things,” she said. “But supporting someone with neurodevelopmental disabilities doesn't have one established road map and I don't think there ever will be one. It's about caring for and listening to the patient and their goals and their caregivers' goals, helping them maximize their life and realizing you're not going to ‘fix everything,’ in one visit.”

“Caring for this population can be among the most rewarding parts of anyone's practice, and I hope that more general neurologists embrace working with people with developmental differences,” said Dr. Margolis. “It's worth the investment in time and the learning curve to get to know the culture. And we in the AAN Section on Adults with Intellectual and Developmental Disabilities are really excited to help.”