For all parents, preparing a child for adulthood can seem daunting and at times improbable. For families raising a child with special needs, like autism spectrum disorder (ASD), the thought of leaving their trusted pediatric providers is often accompanied by anxiety or dread.
Talking about transition early
Pediatric primary care providers play vital roles in coordinating the care of specialists. However, this level of coordination is rarely seen in adult primary care. This can be especially challenging for patients who have autism, a condition often associated with a broad range of medical and behavioral issues that don’t end when a child becomes an adult. In addition to needing care from one or more specialists highly qualified in their field, these patients need the support of a provider who understand the unique characteristics of autism.
The reality is that all patients spend most of their lives as adults; so one of the most important things pediatricians can do for their adolescent patients — and particularly those with special needs — is to begin preparing them for transition to ensure they don’t “fall off the cliff.” Around age 13 or 14, physicians should start the conversation about the need to transition to adult providers by age 18 to 25. Make transition a part of every office visit to help families acclimate and begin to plan. Adolescents should be involved in this process as much as they are able to. This may seem outrageously premature to begin preparing, but all one needs to do is look to the health outcomes data for motivation.
Health outcomes data
Until recently, there was very little data on the health outcomes for adults with ASD, but studies done in the past few years are revealing some sobering trends. Compared to adults without autism, those with ASD have:
- Significantly higher rates of diabetes, gastrointestinal disorders, epilepsy, sleep disorders, cholesterol problems, high blood pressure, and obesity
- A higher rate of chronic heart failure, even though smoking and alcohol use are less common in this population
- Significantly higher rates of depression, anxiety, eating disorders, and bipolar disorder (adults with ASD are 5 times more likely to attempt suicide than those without ASD)
- Higher rates of injuries from falls
- Higher rates of vision and hearing problems
Some problems are more common in women with ASD than men, with higher rates of asthma, allergy, and autoimmune disorders than those without autism. Men with ASD are more likely to struggle with alcohol and drug addiction than women. This is particularly striking since adults with ASD as a whole are less likely to drink than adults who don't have autism, and there are nearly 5 times more males with ASD than females.
Resources are not “built into” the adult healthcare system the way they are with pediatric care. Talking about transition with patients and families early and often gives them the opportunity to start thinking about what medical specialists they will need to see as adults and what skills they need to learn to manage their own care. Remind parents that when children turn 18, they are legally adults. Parents cannot manage or discuss their children’s medical care, when they turn 18, without the child’s permission, unless the parents have legal guardianship.
CHOP-tested guidelines to ease transition
Children’s Hospital of Philadelphia has established supports and guidelines in place to help patients and families with special healthcare needs through this transition. Some of the most important steps pediatricians can take in shepherding the transition process include:
- Talk directly to your patients, beginning when they are preteens or even earlier, to teach them about their condition so they understand what ASD is, common related procedures, and the reasons for certain treatments or recommendations.
- Ask families to keep a comprehensive care binder so they can organize their children’s medical history in a single place. Encourage patients to record information about their appointments in the binder with increasing independence.
- Develop a plan that outlines the roles of pediatricians, patients and adult healthcare providers. Keep it in the care binder and update it annually or as needed and share it with the adult primary care physician when it is time to “hand off” care.
- This might include a list of problems to be addressed, such as insomnia, seizure control, self-care, and eligibility for adult services.
- Discuss important “touchstones” that parents can work on with their child in order to prepare for the transition to adult care. For instance:
- Can they tell a doctor what medicines they take or what allergies they have?
- Do they take medicine by themselves?
- Do they know when their next appointment is?
- Can they communicate physical and/or emotional well-being or problems?
- Encourage the family to include IEP goals geared toward increasing independence as a support to involvement in medical and health care.
- Discuss planning for the appropriate supports if the patient is not able to do certain things independently.
- Discuss with families the importance of planning social opportunities as a support to overall health. Social isolation is a major problem once pediatric patients with ASD age out of the school system.
Starting the dialogue early and continuing the conversation is a tremendous step in the right direction, considering that multiple studies indicate this is a conversation that rarely occurs before age 21. For patients on the autism spectrum for whom planning and routine are crucial, a major and complicated transition can take years. However, when done gradually and in partnership with engaged parents, the potential for vastly improved health outcomes throughout adulthood are well within reach.
References and further readings
Croen LA, Zerbo O, Qian Y, et al. Psychiatric and medical conditions among adults with ASD. Atlanta, Georgia. International Meeting for Autism Research; 2014. Accessed June 5, 2017.
Bruder MB, Kerins G, Mazzarella C, et al. Brief report: the medical care of adults with autism spectrum disorders: identifying the needs. J Autism Dev Disord. 2012;42(11):2498-2504.
Croen LA. Adults with autism suffer high rates of most major disorders. Atlanta, Georgia. International Meeting for Autism Research; 2014. Accessed June 5, 1017.
Cheak-Zamora NC, Yang X, Farmer JE, e al. Disparities in transition planning for youth with autism spectrum disorder. Pediatrics. 2013;131(3):447-454.
Kuhlthau KA, Warfield ME, Hurson J, et al. Pediatric provider's perspectives on the transition to adult health care for youth with autism spectrum disorder: Current strategies and promising new directions. Autism. 2015;19(3):262-271.
The transition team at CHOP has developed a comprehensive toolkit that physicians can share with families. Accessed June 5, 2017.
The CAR Autism RoadmapTM website from CHOP’s Center for Autism Research offers a section on guidance for parents and families on Adulthood Transition. Accessed June 5, 2017.
AASPIRE Healthcare Toolkit. A variety of resources written for and with adults on the spectrum. 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. Accessed June 5, 2017.
Vanderbilt Kennedy Center. Health Care for Adults with Intellectual and Developmental Disabilities: Online toolkit for providers. Accessed June 5, 2017.
Vanderbilt Kennedy Center. Health Watch Table for Autism. Accessed June 5, 2017.
Center for Health Care Transition. Got Transition aims to improve transition from pediatric to adult health care through the use of new and innovative strategies for health professionals and youth and families. gottransition.org. Accessed June 5, 2017.
Contributed by: Susannah Horner, LCSW