Primary Care for Adults on the Autism Spectrum

Key points

ASD diagnosis in adults

In 2013, the Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition (DSM-5) unified autistic disorder, Asperger's disorder, childhood disintegrative disorder, and Pervasive Disorder Not Otherwise Specified into one diagnosis called ASD.³ Although the DSM-5 conceptualizes ASD primarily as a social-communication disorder, there is also a growing literature supporting the hypothesis that ASD may be primarily characterized by differences in information processing.⁴

A large number of

Referrals for assistive technologies and therapies

Assistive technologies, therapies, and services for autistic adults are not meant to treat or cure autism. They may improve function or quality of life by increasing coping strategies, treating co-occurring conditions, or providing access to accommodations and supports. Patients should select therapeutic goals and choose whether they wish to participate in therapy.

Assistive and augmentative communication (AAC) technology can improve communication for adults with limited or variable speech. AAC

Associated conditions

Both genetic and environmental factors play a role in health outcomes.¹⁰ Current evidence suggests autistic adults have high rates of associated chronic medical illness, especially epilepsy, gastrointestinal disorders, feeding and nutritional problems, metabolic syndrome, anxiety, depression, and sleep disturbances. Iatrogenic problems, such as side effects of medications, are also common,11, 12 as is exposure to violence and abuse.¹³

Facilitating effective health care interactions

People with disabilities face significant disparities in health and health care.37, 38, 39 We have found that autistic adults experience greater unmet health care needs, greater emergency room use, less use of recommended preventive care services, lower satisfaction with health care, lower health care self-efficacy, and a greater number of barriers to health care than nonautistic adults.⁴⁰

Many ASD characteristics can directly impact health care. Effective physician-patient communication

Understanding and addressing behavior change

In people with nontraditional communication or atypical cognition, common medical problems can present in unusual ways. Illness often presents as a change from baseline behavior or function. For example, pain can present as social withdrawal or self-injurious or agitated behavior. If the behavior or illness makes caregiving easier (eg, amenorrhea or decreased activity levels) caregivers often fail to report the change. Therefore it is important to record the patient’s baseline in the areas of

Summary

Clinicians can work with patients on the autism spectrum and their supporters to find effective strategies and accommodations to reduce barriers to care. In people with nontraditional communication or atypical cognition, illness often presents as a change from baseline behavior or function. Clinicians should consider a full differential diagnosis, including common medical and psychosocial causes. Appropriate supports and accommodations can reduce illness and disability and maximize patient

Acknowledgments

Many of the recommendations in this article arise from the AASPIRE Healthcare Toolkit Project. Funding for the project was provided by the National Institute of Mental Health (R34MH092503). We would like to thank the many AASPIRE team members and study participants who have contributed to the project.