Leaving the Pediatrician: Charting the Medical Transition of Youth with Autism
Although many teens with autism receive help with the transition to adult services, very few are prepared for another vital transition, that from pediatric doctors to providers who treat adults.
A smooth transition is crucial because, as a recent study revealed, adults with autism have significantly more medical and psychiatric problems than other adults. They have higher rates of depression, anxiety, diabetes, gastrointestinal (GI) disorders, epilepsy, hypertension, sleep disorders and obesity, for example.1
An estimated 50,000 Americans with autism spectrum disorder (ASD) will turn 18 each year2, part of "a surge of children" diagnosed in the 1990s.3 Those young adults will be leaving their pediatricians' offices for doctors who specialize in adult medicine – but who may lack experience with autism.
Many medical experts in autism, such as developmental pediatricians, only treat children and teenagers. Pediatricians, who are on the front lines of recognizing and managing care for developmental disorders, often stop seeing their patients when they reach ages 18 to 22.
Experts in adult medicine, such as internists, may not have the same experience with autism as pediatricians. In fact, many doctors who treat adults lack formal training in autism. In a survey of 346 physicians in Connecticut, almost two-thirds said they did not receive any training in the care of adults with autism.4
Opening the door to adult medical care
"Doctors caring for adults need to be aware that adults have autism and that there might be a patient walking through their door that has autism," said Lisa Croen Ph.D., director of the autism research program at Kaiser Permanente Northern California.5
"They need better training in what autism is and better tools in how to treat and provide health care for adults with autism to overcome some of the core impairments, specifically communication impairments and sensory processing impairments, that can really interfere with providing adequate care to patients with autism," she said at the 2014 International Meeting for Autism Research.
Dr. Croen emphasized the importance of a smooth transition of youth with autism into adult medical care, especially given their "significant burden" of health concerns. "I think it's really critical that we focus on this transition from pediatric to adult medicine and improve the hand-off" between doctors, she said.
Several studies have highlighted problems in the transition from pediatric doctors to those who treat adults. A study published in the prestigious journal, Pediatrics, found that youth with ASD received "health care transition services" half as often as youth with other special health care needs.6
Transition Services Uneven
Only 14 percent of youth with ASD talked with their pediatricians about switching to a doctor who treats adults. Also, less than half of the youth talked with their pediatricians about adult health care needs or taking "appropriate responsibility" for their care. Only a fourth of the youth spoke with their doctors about keeping health insurance in adulthood.6
"Counseling youth on transition to adult life and adult health care services may seem like an impossible and/or inconsequential task when the most of a short appointment time with a physician is spent addressing immediate and pressing health needs," the article in noted. And doctors cannot bill for the time spent on health care transition services.6
Those researchers also advocated more autism training for doctors who treat adults. Many regions have a shortage of doctors "with an understanding of developmental disabilities, such as ASD, and its associated conditions."6 Another study, this one involving interviews with autism specialists, also endorsed autism-specific training for current and future doctors who treat adults.7
Many doctors who treat adults would like such training. More than half of the doctors in the Connecticut survey said they wanted more training in autism.4
Without a planned transition, a young adult with autism could find himself with a gap in medical care that could lead to "unintended consequences," said Paul Carbone M.D., Associate Professor of Pediatrics at University of Utah School of Medicine. For example, youth may end up in hospital emergency rooms for psychiatric conditions or other problems that "could have been treated through primary medical care," he said.
A Medical Transition in Four Parts
So what does a good medical transition look like?
Dr. Carbone works in a clinic that follows a four-step approach to moving youth to adult providers within the same practice. His University of Utah Neurobehavioral H.O.M.E. Program serves children and adults with developmental disabilities. When his patients reach 13, Dr. Carbone lets their parents know that they will begin seeing adult providers at age 22. Parents feel concerned about such a move, although it is years away. "It causes a lot of anxiety. Parents ask, 'What are you talking about? You're talking about kicking her out?'"
That anxiety is not uncommon. In an essay, parent Wanda P. Kelty described the fear she felt when she realized that her teenage daughter, Kayla, would have to leave her pediatric doctors when she reached adulthood. Kayla has autism, visual impairment and a pituitary gland problem. "Sheer terror rolled over me as I realized there could be an expiration date for each of the professionals who helped me unscramble medical terms and understand how they affected Kayla and her life."8
Dr. Carbone said he mentions the transition early so families may start thinking about it. What medical specialists will these teens see as adults? What skills will they need to learn to manage their own care? For instance, can they tell a doctor what medicines they take? Do they take medicine by themselves? Do they know when their next appointment is?
The next step is to develop a plan that outlines the role of pediatrician, patients and adult health care providers. Step three involves reviewing and updating the plan, which might include a list of problems to be addressed, such as insomnia, seizure control, self-care and eligibility for adult services. "As we get closer to the age of transition it becomes necessary to identify an adult medical home," where the young adult will receive his primary care. "It's my responsibility to communicate with that provider," he said.
The final step is the actual transition, which includes a transfer of the patient and his medical information to a family practitioner or internist. "This has the potential to be a nice, seamless hand-off in which nothing gets dropped," he said.
Many children with autism receive primary care from general pediatricians in community-based practices, which may not have the resources of Dr. Carbone's clinic. What should parents of teenagers do if their pediatricians have not even mentioned a transition yet?
Dr. Carbone recommends that they be proactive. Parents can tell their pediatrician that they highly value their care and would like their help when their child reaches the age to see adult providers. "This is a big step coming up, and you want your pediatrician's help in getting there," Dr. Carbone said.
Another thing for parents to consider: when their child turns 18, he is legally an adult. Parents cannot manage or discuss his medical care with his providers without his permission, unless they have legal guardianship of him.
Adults with Autism Have More Health Care Needs
Dr. Carbone said recent research on the medical problems of adults with autism should be a "wake-up call" for doctors.
Dr. Croen led a research team that investigated the rate of health problems in adults with autism. "There's been very little attention on adults with autism to date, so we conducted the first large study examining medical and psychiatric conditions among adults of all ages from 18 through over 60," she explained.
Researchers analyzed the records of 2,108 adults with autism spectrum disorder and compared them to a "control group" of 21,080 adults who do not have the condition. Those groups were selected from more than 2.5 million adults enrolled in the Kaiser Permanente Northern California health plan from 2008 to 2012.
The autism group had about twice the rate of depression and anxiety, and eight times the rate of bipolar disorder, as the control group. They were five times more likely to attempt suicide. Adults with autism also have higher rates of diabetes, gastrointestinal disorders, epilepsy, sleep disorders, cholesterol problems, high blood pressure and obesity.1
In the group with autism, two-thirds were men and 21 percent had a cognitive impairment. One-third had classic autism, with the rest having another spectrum diagnosis, Dr. Croen said. Their average age was 32.
Some problems were more common in women with ASD. Women are twice as likely as the control group to be addicted to drugs and alcohol, even though adults with ASD as a whole are less likely to drink than adults who don't have autism. (Males outnumber females with autism by 4 to 1; in "high functioning autism" and Asperger's, the gender ratio is estimated to be 10 males to 1 female.9) Unlike their male counterparts, women with autism had higher rates of asthma, allergy and autoimmune disorders than the control group.
Overall, adults with autism had a higher rate of chronic heart failure than the control group, even though they were much less likely to smoke or drink alcohol.
The adults with ASD were more likely to have eating disorders, injuries from falls, and vision and hearing problems than the other adults studied. Cancer occurred in equal rates between the ASD and non-ASD groups. The chart above illustrates the differences Dr. Croen's study found.
Improving the social inclusion of people with autism will have a payoff in health, Dr. Croen said. "If we can promote better inclusion in all aspects of society, including social services, education, employment in the community and what happens in the family, this will really be a key to promoting better health for adults with autism," she said.
- 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.
- A Nemours Video on YouTube, "Becoming an Adult: Taking Responsibility for Your Medical Care," describes the skills young adults need to manage their health care.
- Although not specific to autism, the Center for Health Care Transition has information for providers and patients at gottransition.org, along with a helpful question and answer page for youth and parents.
- Croen, L.A., Zerbo, O., Qian, Y., & Massolo, M.L. (2014) Psychiatric and Medical Conditions Among Adults with ASD. Delivered at the International Meeting for Autism Research, May 15, 2014. Retrieved on 5/20/14 from https://imfar.confex.com/imfar/2014/webprogram/Paper17783.html.
- Roux, A.M., Shattuck, P.T., Cooper, B.P., Anderson, K.A., Wagner, M. & Narendorf, SC. (2013) Postsecondary employment experiences among young adults with an autism spectrum disorder. J Am Acad Child Adolesc Psychiatry. 2013 Sep;52(9):931-9. View abstract.
- VanBergeijk, E., Klin, A. & Volkmar, F. (2008) Supporting More Able Students on the Autism Spectrum. Autism Dev Disord (2008) 38:1359–1370. View abstract.
- 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. J Autism Dev Disord. 2012 Nov;42(11):2498-504. View abstract.
- Croen, L.A. Video of remarks at IMFAR retrieved on 5/20/14 from http://www.autismspeaks.org/science/science-news/adults-autism-suffer-high-rates-most-major-disorders
- Cheak-Zamora, N.C., Yang, X., Farmer, J.E. & Clark, M. (2013) Disparities in transition planning for youth with autism spectrum disorder. Pediatrics. 2013 Mar;131(3):447-54. View abstract.
- Kuhlthau, K.A., Warfield, M.E., Hurson, J., Delahaye, J. & Crossman, M.K. (2014) Pediatric provider's perspectives on the transition to adult health care for youth with autism spectrum disorder: Current strategies and promising new directions. Autism. 2014 Feb 4. View abstract.
- Felty, W.P. "The Transition Tango." Retrieved on 6/17/14 from http://www.gottransition.org/resourceGet.cfm?id=92
- Dworzynski, K., Ronald, A., Bolton, P. & Happé, F. (2012) How different are girls and boys above and below the diagnostic threshold for autism spectrum disorders? J Am Acad Child Adolesc Psychiatry. 2012 Aug;51(8):788-97. View abstract.
Photo credits: 1) Illustration of doctor and patient from Clipart.com, 2) Photo of Dr. Paul Carbone from University of Utah School of Medicine.