Internists must gain skillset to care for young adult patients with autism or intellectual disability

WASHINGTON — Adults with autism or intellectual disabilities have higher rates of preventable mortality, co-morbidities and chronic conditions, and less access to preventative care “not necessarily from an insurance perspective but because of negative interactions that these families have” with health care providers, said one researcher here.

“This is a unique population that comes with some challenges but also a lot of strengths and joyous to take care of as well,” Alice Kuo, MD, PhD, said.

According to Kuo, there are 1.2 million adults with an intellectual disability and 3.5 million adults with autism spectrum disorder. She noted that the CDC reaffirmed that adults with autism spectrum disorder constitute 1 in 68 of the US population.

“The cost of life-long care [of patients with autism] can be reduced by two-thirds with early diagnosis and intervention,” she said.

There are cognitive challenges in understanding, recognizing and communicating health problems that affect treatment adherence, Kuo said.

Physicians often do not the skillset or formal training in residency to deal with patients who have difficult or challenging behaviors as a result of their medical conditions.

The skillset disparity particularly comes to light when these patient populations transition from a pediatric practice to an adult practice.

Kuo outlined goals of health care for adults with intellectual and development disabilities (IDD).

First, help families connect to needed services such as conservatorship/guardianship. She noted this is important as on a child’s 18^th birthday they are legally responsible for their own health care.

Also, encourage some programming for the young adult with IDD – either part-time employment or a training program, and support families and parents through the entire process. Especially early in the transition process for the young adult, Kuo sees the patients and parents every 2 to 3 months to assist with these goals.

She tells parents “this is a marathon, not a sprint. You don’t need to connect with every single little early intervention program and try to get your child as ready and optimized as possible. On the other end, 20 years later these parents are, I describe, battle-worn, weary. They have fought the battle.”

Routine health care is, of course, an important goal, Kuo said. She pointed to the Got Transition tool as vital to helping internists to prepare for and optimize their treatment of patients with IDD. — by Joan-Marie Stiglich, ELS

For more information :

Kuo AA. Caring for an Adult with Intellectual/Developmental Disability. Presented at: ACP Internal Medicine Meeting; May 5-7, 2016; Washington, D.C.
www.acponline.org/pediatric-adult-care-transitions
http://gottransition.org/resources

Disclosure: The researcher reports no relevant financial disclosures.