The lack of care coordination for those with autism is costly for patients and providers alike.
When Chelsea Deinert hung up the phone with the caretaker at her son's group home, she knew it wasn't going to be easy. After all, just to administer a shot during a routine doctor's visit, it would take four people to hold down her son, Patrick, a 29-year-old with severe autism. Over time Patrick has learned to associate doctors and hospitals with pain and discomfort, says Deinert, who happens to be a Nashville-based registered nurse.
This was something more serious than a simple injection: a trip to the emergency room after a day of continual vomiting and diarrhea. Patrick has limited speech and sometimes acts out when he is anxious or in pain. His mother says she thinks this behavior could have influenced a course of treatment that ruled out an exploratory laparoscopy for Patrick's small bowel obstruction.
"Some surgeons would do exploratory surgery in a heartbeat," says Deinert, "but for some reason they weren't going to do surgery on him, even though the KUB x-ray showed something." Whatever the physician's plan was, Deinert says it was not shared with her.
Deinert and her husband, Paul (who is also a registered nurse), still don't fully understand all of the complications that led to their son's 12-day inpatient stay. The physician did rounds late in the evening and didn't respond quickly to calls. The nurses were no more helpful. The Deinerts say the communication on the unit was very poor.
"Good thing for them that they didn't give me a patient satisfaction survey," she says.
A perception is forming among those with autism, family caregivers, and medical professionals who specialize in autism spectrum disorders (or ASD) that the healthcare system as it is currently constructed far too often provides inadequate medical care for those on the autism spectrum. The tight-knit medical community specialized in treating those with ASD says delayed or denied healthcare not only compounds medical problems and prolongs suffering, but it could also escalate the healthcare costs associated with people on the autism spectrum.
"I have heard medical practitioners refer to us as 'autism patients,' whether or not the reason for coming in to see a healthcare provider has anything to do with autism," says Paula C. Durbin-Westby, a member of the board of directors for the Autistic Self Advocacy Network.
For years, the stigma of autism kept it from being discussed openly, but in the past two decades researchers have identified it as a neurological disorder, and advocacy groups have publicly promoted early detection, special education, and therapy. The precise causes of autism are not yet known, but some evidence suggests a combination of genetic and environmental influences. As a spectrum disorder, autism affects communication and social interaction in varying degrees; those with ASD often present with restrictive or repetitive behaviors and interests. Last December, the CDC released a report confirming that the prevalence of ASD in the United States is 1% of the population (or one in 110 children 8 years of age in 2006).
A challenging 1%
As a pediatric neurologist, Margaret L. Bauman, MD, was among the pioneering medical researchers in the early 1980s who made the connection that autism was a neurological disorder. Now Bauman is director of Massachusetts General Hospital's Lurie Center/LADDERS (Learning and Developmental Disabilities Evaluation & Rehabilitation Services), what she describes as a "one-stop shop" for children, adolescents, and adults with autism. Last year the program received a charitable gift of $29 million from the Nancy Lurie Marks family foundation.
The philanthropy allows the Lurie Center/LADDERS multidisciplinary team to run an annual deficit in the hundreds of thousands of dollars, says Bauman, and helps support about 4,000 medical visits per year.
Bauman says her program, and the handful around the country like it, are needed to take on the challenging cases of the severely autistic. Even experienced medical professionals can easily allow ASD to mask medical symptoms, she says.
"Up to this point, people have perceived that aggression and self-injurious behavior is just part of autism," says Bauman. "Then [the patient with ASD] ends up at a psychiatrist and is on a pile of psychotropics or antidepressants. Because we have this interdisciplinary team, we've been able to see that what we really have is a nonverbal person who has poor sensory processing, so they can't vocalize pain or discomfort very well. We go to great lengths to work these [patients] up for all kinds of medical issues."
Susan Hyman, MD, is associate professor of pediatrics in the Division of Neurodevelopmental and Behavioral Pediatrics at University of Rochester Medical Center's 124-bed Golisano Children's Hospital. She says she has heard parents of autistic children complain that physicians will attribute everything to ASD. "That's certainly a barrier to early diagnosis if you're not thinking about it," she says. "Many physicians, according to parents, will say that everything is the autism—irritability is the autism, head banging is the autism—and in reality the irritability could be a medical problem, such as reflux or constipation."
With the exception of pediatricians, most physicians and nurses don't have specific training in treating patients with ASD. A study published last year in the journal Pediatrics found that primary care physicians report a lack of self-perceived competency when treating autistic children compared to children with other neurodevelopmental or complex medical conditions.
Hyman points out that not only are patients with ASD likely to have language deficiencies, but they could also be inattentive to pain or not register pain in the same way a neurotypical patient would. "Physicians caring for children with disabilities, including autism, need to be aware of potential comorbidities and think about the child in that total fashion, incorporating both behavioral and medical symptoms," she says.
Those with ASD are likely to have multiple healthcare providers who operate in silos of care, not interacting with each other to exchange useful information. In fact, the decision about where care should begin is often left to a family member or paid caretaker. When the caretaker mistakes a medical issue for a behavioral one, needed care can be delayed and the problem compounded, especially if psychiatric medication is altered to address the perceived behavioral change.