Interactive Autism Network at Kennedy Krieger Institute
Date Published: April 8, 2016
Cheryl Hammond knew that tone of voice. She would call a new medical office and say something like: "I'm looking for a doctor for my adult son. He has autism." First a pause, then the voice on the other end of the phone would say, "We haven't worked with anyone like that before." As Ms. Hammond recalled, "It's always with the tone of, 'I don't know if we can do that.'"
She wonders why doctors' offices seem surprised by new patients like her son, 22-year-old Kyle – and what they will do about the many who will come after him. "One in 68 children has autism now. What are you going to do in a few years when they are adults?" she asks.
Mr. Hammond was diagnosed when cases began swelling in the 1990s. He is part of the first large wave of people with autism to enter adulthood – and an adult health care system that has limited experience with the condition. Most autism experts seem to be in pediatrics, even though children usually do not shed their autism diagnoses on their 18th or 21st birthdays. Are those who treat adults – internists, family medicine physicians, psychiatrists, counselors, and psychologists – prepared for a growing number of patients like Mr. Hammond?
Unfortunately, many are not. In recent studies, a majority of health care providers themselves reported needing more training in autism spectrum disorder (ASD),1 and having "poor or fair" knowledge and skills in providing care to adults with autism.2
In a survey of 922 providers in the Kaiser Permanente Northern California health plan, those rating their knowledge and skills as poor or fair included 79 percent of practitioners in adult medicine.2 Researchers did in-depth interviews with nine of those primary care doctors. "With the exception of one physician trained both in pediatrics and internal medicine, all others indicated they had little or no autism training during medical school or residency," according to the study. A residency refers to the time new doctors spend receiving training and supervision in hospitals or clinics, before practicing on their own.
Doctors Want More Autism Training
More than 600 of the health care providers surveyed wanted to learn strategies for communicating effectively with adults with autism. In interviews, some expressed frustration at not knowing how to establish a rapport with such patients. Most providers also said they would benefit from an autism conference, and they wanted special clinics for adults with developmental disabilities within Kaiser Permanente. 2
Autism is a developmental condition affecting the brain; it is technically a psychiatric diagnosis. Yet that does not mean that mental health providers are necessarily better prepared for adults with autism. Seventy percent of mental health providers in the Kaiser Permanente survey rated their autism knowledge/skills as poor or fair, and a similar percentage did not believe they had the tools and resources to accommodate adults with autism in their practices.2 "We were surprised by these findings," said the lead researcher, epidemiologist Lisa A. Croen PhD, director of the Autism Research Program at Kaiser Permanente.
How much autism training do general (adult) psychiatrists receive? A different research team tried to find out. The team sent a survey to the directors of 182 adult psychiatric training programs, asking about ASD and intellectual disability. However, few people responded, and researchers did not analyze their surveys because there were too few to be statistically valid. One director commented: "Is this really an important topic?," said Natasha Marrus, MD, PhD, who led that team.3
Some health care providers feel confident in their autism knowledge. In the Kaiser Permanente survey, 13 percent of the physicians, psychologists, social workers, family therapists, and nurses said they had adequate tools, resources and practice models to accommodate adults with autism. Some actively sought to welcome such patients. One family doctor, for instance, modified her offices to accommodate the sensory sensitivities of several "high functioning professional adults with Asperger's Syndrome," a form of ASD. Her clinic has "serene, uncrowded waiting rooms" and, in the exam rooms, "low light, extra-large screen monitors that both doctor and patient can look at together."2
Learning More About Adults With ASD
Dr. Croen launched several Kaiser studies to learn more about the needs of patients and doctors. "We have a large number of pediatric patients with ASD who are becoming adults each year and transitioning from pediatrics to adult medicine. We wanted to know about the health status of adults with autism, their health care utilization patterns, and what the adult providers knew about autism," she said. Meanwhile, some adults who suspected they have autism had asked Kaiser how they could be tested for ASD.
Society is struggling to understand autism beyond childhood, explained Nancy Cheak-Zamora PhD, assistant professor of health sciences at University of Missouri. "Our society as a whole has not caught up with the increase in diagnoses of autism and our understanding of what autism is and how it progresses throughout the life course. People have to understand that autism doesn't stop at childhood," she said.
Kate Gladstone understands better than most people the challenges of finding health care providers who understand autism in adults. At age 53, Ms. Gladstone belongs to a generation that could not be diagnosed with Asperger's Syndrome in childhood, because it did not exist as a diagnosis until 1994. By that time, Ms. Gladstone had earned college and graduate degrees, and begun working. She wasn't diagnosed with Asperger's until her 40s. When she told her primary care doctor, "he confessed ignorance and went to his office computer to look it up in a medical resource. He also picked out a movie to watch to try to understand it more," said Ms. Gladstone, a New Yorker.
But other doctors seemed confused when she told them about her autism, thinking she was talking about a child rather than herself. "It took a while for them to understand that the adult in their office, who was speaking coherent English, who has a business, who got to the appointment on time, that this adult is autistic," said Ms. Gladstone, who runs a handwriting improvement business. Once they made that realization, however, they treated her differently. "I would instantly be talked to like a baby," she said, imitating the slow, exaggerated way in which some health care providers spoke: "Katie, let's see if you can stop eating candy, cookies and ice cream. I would like to get you a social story and will draw you some picture hints to help you eat the goood foods, and not the baaad foods."
Ideally, Ms. Gladstone said, medical and therapy practices would be better versed in adult autism. They would understand that she may not be able to provide a "20-second answer" to their questions, and would let her communicate by email as necessary. They would provide several appointment reminders, among other accommodations.
Ms. Gladstone, along with several parents, said they have had to educate health-care providers about autism themselves. Although autism knowledge increases annually, thanks to new research, some health-care providers may not see patients with autism and keep up with new findings.
As recently as a 2005 study, some primary care providers harbored misconceptions of autism that dated back to the 1940s and 1950s. For example, some saw a link between autism and schizophrenia (they're different conditions) and believed autism was caused by cold, rejecting parents (a long-discredited theory).4
Just last year, another study suggested that some health-care providers are still lagging behind, at least according to some of their patients. "Autistic adults and supporters almost uniformly complained about providers' lack of knowledge about autism in adults," according to a 2015 study. For that study, researchers interviewed 39 adults with ASD and 16 "supporters" – relatives and disability services workers – who accompany people with autism to medical appointments. One supporter complained, "People attribute behaviors to the autism rather than looking for an illness first. 'Oh that's her autism, she's banging her head against the wall because that's her autism.' Nobody thinks, 'Oh gosh! Maybe she has a migraine!'"5
Families Facing The Medical Transition to Adulthood
In fact, the prospect of having to educate a whole new crop of doctors worries some young adults, and their parents, as they leave their pediatricians. Parents also may face another challenge: U.S. privacy laws make it harder for them to be involved in adult children's health care, unless their children agree to it, or they go to court to become their guardians.
Cheryl Hammond is her adult son's guardian, a legal process she undertook so that she could protect his interests in adulthood. Yet she still encountered problems with his health care. When her son was 18, he needed stitches for a wound at a hospital emergency room in Ohio, where they live. She tried to accompany him into the treatment room, but hospital staff stopped her. "He's 18," a hospital employee said. "You can't go back there with him." Ms. Hammond whipped out the legal paper proving that she was his guardian. "They still argued with me. I had to go to the person over his head, "said Ms. Hammond, a participant in the Simons Simplex autism research project.
Why, she asks, does the health care system act as though something transformative happens on a person's 18th birthday? Her son had the same needs he had a day earlier, but after 18, her role – and his doctors – had to change. "All of a sudden the brakes stopped when the clock turned one more second over, and everyone said, 'He's an adult now. You have to take him to another doctor.'"
Marcie Delgado, another parent of a young adult in the Simons Simplex autism project, agreed. In fact, she used almost the same words, describing the transition to adult medicine as a sudden "hard stop" for people who might be better served in pediatrics for a while longer.
"Turning 18 is this defining moment," Ms. Delgado said. "In that 24-hour period, you go from being a child to being an adult, and you have to have adult providers. It's so unfair. It should be more flexible and fluid for people who may have a developmental age that is different than their chronological age."
Dr. Cheak-Zamora has studied the experiences of families like the Hammonds and Delgados. Her research team found that parents and youth with autism felt "tremendous angst and unease" during the health care transition. "They've spent years educating doctors about their child and don't want to start over and do that all over again," she said.
In one of her studies, parents who did not have guardianship of their adult children worried about being cut out of their health care decisions, with harmful consequences. One parent, for example, was not allowed to make a counseling appointment for her 18-year-old son with autism: "They said he has to be the one to call." Another parent said her son was admitted to a hospital 13 times for psychiatric care, but she could not talk to his doctors because he would not allow it. One mother said her 21-year-old daughter wanted her to talk to her doctor, because she was uncomfortable with strangers, but the doctor would not see mother and daughter together. The mother had to write a script for her daughter to read to the doctor.6
For their part, some young adults in the study seemed largely unaware of the role health care providers should play in their lives. Some said their parents should continue to be in charge of their health care, while others wanted more control and responsibility. 6 Some youth said they needed the skills to be more active in managing their health.
Those skills could be taught during the teen years, during health-care transition services led by pediatricians. These services typically involve a series of discussions with the teen about managing his health, maintaining insurance, and working with new doctors when he becomes an adult.7 Unfortunately, most pediatricians are not providing a full range of transition services to youth with autism.6, 7
The Autistic Self-Advocacy Network, a disability rights group, says schools can help teach students the skills needed to make health-care decisions. It notes that parents can request that such skills be included on a teenager's special education plan, as a transition goal necessary for independent living.8
Finding Providers Familiar With Autism
If you're going to be in health care, you're going to have to have some level of knowledge and understanding of autism because it touches us all.
To make the transition smoother, some families seek out new health-care providers knowledgeable about autism. Ms. Delgado, for one, has an advantage: "Being a nurse may make it a little bit easier for me to navigate the health care system," she said. When her 20-year-old son needed a new doctor, she said, "I looked for someone with an affiliation with a university because they have to stay on top of their game," she said. She lives in the Austin, Texas, area, home to several colleges and universities. "I look at the teaching faculty, and that's how I found health care providers." She also advises families to contact autism organizations for information on doctors and counselors who often treat patients with ASD.
She believes that all health care providers will need to become aware of autism, just like they became knowledgeable about another condition, HIV infection, several decades ago. "It's part of our lives. As a nurse, I'm expected to be knowledgeable about HIV even though I don't necessarily have patients with it. If you're going to be in health care, you're going to have to have some level of knowledge and understanding of autism because it touches us all."
- See an IAN article on "Leaving the Pediatrician: Charting the Medical Transition of Youth with Autism"
- For a variety of excellent resources written for and with adults on the spectrum use the AASPIRE Healthcare Toolkit. It includes information on staying healthy, healthcare, and healthcare rights along with valuable checklists and worksheets. This site also provides a toolkit for healthcare providers.
- Vanderbilt Kennedy Center has an online toolkit for providers, Health Care for Adults with Intellectual and Developmental Disabilities, and a Health Watch Table for Autism. Patients can share this information with their current and future doctors.
- Bruder, M. B., Kerins, G., Mazzarella, C., Sims, J., & Stein, N. (2012). Brief report: The medical care of adults with autism spectrum disorders: Identifying the needs. Journal of Autism and Developmental Disorders, 42(11), 2498-2504. doi:10.1007/s10803-012-1496-x [doi]
- Zerbo, O., Massolo, M. L., Qian, Y., & Croen, L. A. (2015). A study of physician knowledge and experience with autism in adults in a large integrated healthcare system. Journal of Autism and Developmental Disorders, 45(12), 4002-4014. doi:10.1007/s10803-015-2579-2 [doi]
- Marrus, N., Veenstra-Vanderweele, J., Hellings, J. A., Stigler, K. A., Szymanski, L., King, B. H., . . . Pruett, J. R.,Jr. (2014). Training of child and adolescent psychiatry fellows in autism and intellectual disability. Autism : The International Journal of Research and Practice, 18(4), 471-475. doi:10.1177/1362361313477247 [doi]
- Heidgerken, A. D., Geffken, G., Modi, A., & Frakey, L. (2005). A survey of autism knowledge in a health care setting. Journal of Autism and Developmental Disorders, 35(3), 323-330.
- Nicolaidis, C., Raymaker, D. M., Ashkenazy, E., McDonald, K. E., Dern, S., Baggs, A. E., . . . Boisclair, W. C. (2015). "Respect the way I need to communicate with you": Healthcare experiences of adults on the autism spectrum. Autism : The International Journal of Research and Practice, 19(7), 824-831. doi:10.1177/1362361315576221 [doi]
- Cheak-Zamora, N. C., & Teti, M. (2015). "You think it's hard now ... it gets much harder for our children": Youth with autism and their caregiver's perspectives of health care transition services. Autism : The International Journal of Research and Practice, 19(8), 992-1001. doi:10.1177/1362361314558279 [doi]
- Cheak-Zamora, N. C., Yang, X., Farmer, J. E., & Clark, M. (2013). Disparities in transition planning for youth with autism spectrum disorder. Pediatrics, 131(3), 447-454. doi:10.1542/peds.2012-1572 [doi]
- Autistic Self Advocacy Network.Transition to adulthood: A health care guide for youth and families. Retrieved from http://autisticadvocacy.org/wp-content/uploads/2014/07/ASAN-healthcare-toolkit-final.pdf