When Devon Kennedy was small, a visit to the dentist could induce an episode of panic. Having a cavity filled, while unpleasant for anyone, was for him, a nightmare.
But his dentist, Chrystalla Orthodoxou, had confidence that Devon, who has an autism spectrum disorder (ASD), could come to terms with a dental checkup — even with having a cavity filled.
As chief of dentistry at Premier HealthCare, a member of the YAI/National Institute for People with Disabilities Network, Dr. Orthodoxou has the training and experience necessary to set patients like Devon at ease. She spent several visits dedicated solely to acclimating Devon to the dental chair and instruments and building a trusting relationship with him.
“For individuals with autism, who may have more difficulty understanding the importance of health care, anxiety can create significant obstacles to physical well-being and overall quality of life,” said David Kaufman, M.D., medical director at Premier HealthCare.
“The staff at Premier HealthCare take the time to understand each patient’s specific situation, help them overcome their fear and successfully complete the necessary clinical procedures,” Dr. Orthodoxou said.
Cathy, Devon’s mother, will never forget the day that Devon was able to calmly have a cavity filled, an event that would have been unthinkable a few months before. “Dr. Orthodoxou called me later that day, saying, ‘I knew he could do it! I knew he could do it!’” she recalls.
For Devon, now 16, trips to the dentist are now easy and, thanks in part to his regular checkups, he has been cavity-free for years.
Overcoming Barriers to Good Health
For many people on the autism spectrum, routine medical checkups and dental visits often have to be administered under general anesthesia and may even result in trips to the emergency room. This often causes families or caregivers to forgo important preventative checkups and exams. Barriers to accessing care are a major issue for this population.
“People with ASDs have the same medical needs as anybody else,” said Stephen E. Freeman, Associate Executive Director of YAI/National Institute for People with Disabilities. “But they also have specific health concerns that need to be addressed. They often require more time and patience to treat than the general population, so it can be very difficult to find doctors, dentists and mental health professionals who have the knowledge and willingness to work with them.”
According to a 2002 report by the U.S. Surgeon General titled “Closing the Gap: A National Blueprint to Improve the Health of Persons with Mental Retardation,” children, adolescents and adults with intellectual disabilities — which include many, but not all, people on the autism spectrum — “experience poorer health and more difficulty in finding, getting to and paying for appropriate health care.”
In fact, a 2002 study conducted by researchers from the Heller School for Social Policy and Management at Brandeis University found that more than a third of children with autism encountered obstacles in obtaining necessary care from medical specialists over a 12-month time span. The reason? An inability to find referrals and providers with appropriate training (Krauss, Gulley, Sciegaj & Wells, 2002).
For decades, this has been a fact of life for many people with ASDs. And while health care services for people with autism have begun to improve, much needs to be accomplished in providing access to services and educating health care professionals about patients with autism spectrum disorders.
A Model for Community-Based Health Care
Premier HealthCare was founded in 1997 to serve people with disabilities, whose needs were simply not being met by the traditional health care system. This person-centered, community-based model of health care was a pioneer in providing sensitive, specialized services for individuals with disabilities. Unfortunately, this type of care is still unavailable to thousands upon thousands with autism and other disabilities.
At Premier HealthCare, patients visit general practitioners, specialists, dentists, psychiatrists, physical and occupational therapists and other professionals, in a familiar setting in their communities. Premier employs a diverse multilingual staff who can provide services and information to our patients and their families in a culturally appropriate way. Our health care providers are trained to be sensitive to and aware of the needs of people with disabilities, who may have acute anxiety, trouble communicating or other issues requiring extra time and understanding that may be difficult to find in a standard doctor’s office, let alone a hospital emergency room.
“A level of sensitivity is a critical component of serving people in their communities,” said Marco Damiani, director of Clinical and Family Services at YAI/National Institute for People with Disabilities. “This has led Premier HealthCare to provide services by clinicians who have special awareness and training about our patients’ needs, as well as to a continuity of care, so that patients don’t have to get to know a new doctor every time they have a checkup.”
And unlike in typical practice settings, medical staff from all different specialties come together at each of our neighborhood centers to learn from one another and to collaborate on behalf of individual patients, eliminating phone tag or communication breakdowns. For example, when a child visits the center, a family doctor can walk down the hall to talk to the neurologist and coordinate medications, and then on the way back, inquire with the social worker about eligibility for a summer camping program, and finally, catch the psychiatrist to ask about the child’s behavioral progress.
In 2002, the U.S. Surgeon General recognized Premier HealthCare as a national model in the provision of health care for people with disabilities in their communities.
Health Concerns Specific to Autism
In addition to being aware of the social and psychological needs of individuals with autism, health care providers should also be aware of certain medical issues that arise more frequently in these patients.
By the latest estimates, 40 percent or more of people with an ASD also have an intellectual impairment. In classic autism, the rates are as high as 70 percent. In addition, the medical community has long known that up to a quarter of people with an ASD also have epilepsy. As a condition affecting many areas of brain and behavioral development, autism — whatever its causes are — also affects other developing body systems.
Current hot research topics in the field include explorations of why people with autism tend to be more susceptible to various gastrointestinal disturbances, immune and inflammatory conditions and sleep disorders. One interesting area of investigation is the so-called “hygiene hypothesis,” which proposes that current hygiene practices in western societies prevent children from being exposed to the environment in a way that encourages proper development of their immune systems. And in certain children, including those with a genetic risk for autism, this may have a long-lasting effect on brain development and neurological reactivity.
Autism has also been associated with genetic and congenital conditions such as fragile X syndrome, tuberous sclerosis and congenital rubella syndrome.
Lastly, there are a number of general considerations to keep in mind when working in a medical environment with people with autism. When patients with limited verbal skills experience discomfort or are in pain, they may express their distress through aggression or self-injurious behaviors, by yelling or by withdrawing. What, to untrained staff, may at first appear to be a behavioral issue could actually be a serious health concern and lead to a medical emergency.
A common feature of autism is the prevalence of repetitive behaviors: rocking, hand-flapping, jumping, pacing. Because these behaviors are used by some people with an ASD to cope with anxiety, they can be used by providers as a guideline for assessing the patient’s level of discomfort and stress. Increased rocking may mean increased pain or anxiety.
People with autism are typically hypersensitive to many types of sensory stimuli, easily ignored by the general population. Packed waiting rooms, glaring and buzzing fluorescent lights, scratchy upholstery and cloying deodorizing agents can all turn a routine medical visit into a very challenging day for our patients. A welcoming waiting room experience that is predictable, cool and away from the bustle can result in a happy and easy-going patient for the long term.
We as doctors, dentists, nurses and other clinicians must understand our obligation to explain procedures to our patients in a way that diminishes fear, enhances our patients’ understanding of their health and empowers them to make healthful choices.
Peter DellaBella, M.D. is the Associate Medical Director and Chief of Psychiatry at Premier HealthCare, a member of the YAI/National Institute for People with Disabilities Network. For more information on medical services for children and adults with autism spectrum disorders and other disabilities, please contact YAI LINK at 1-866-2-YAI-LINK; TDD: 212-290-2787, firstname.lastname@example.org or visit www.yai.org.