Clarissa Kripke

The health status of adults on the autism spectrum

Compared to the general pediatric population, children with autism have higher rates of co-occurring medical and psychiatric illnesses, yet very little is known about the general health status of adults with autism. The objective of this study was to describe the frequency of psychiatric and medical conditions among a large, diverse, insured population of adults with autism in the United States. Participants were adult members of Kaiser Permanente Northern California enrolled from 2008 to 2012. Autism spectrum disorder cases (N = 1507) were adults with autism spectrum disorder diagnoses (International Classification of Diseases-9-Clinical Modification codes 299.0, 299.8, 299.9) recorded in medical records on at least two separate occasions. Controls (N = 15,070) were adults without any autism spectrum disorder diagnoses sampled at a 10:1 ratio and frequency matched to cases on sex and age. Adults with autism had significantly increased rates of all major psychiatric disorders including depression, anxiety, bipolar disorder, obsessive–compulsive disorder, schizophrenia, and suicide attempts. Nearly all medical conditions were significantly more common in adults with autism, including immune conditions, gastrointestinal and sleep disorders, seizure, obesity, dyslipidemia, hypertension, and diabetes. Rarer conditions, such as stroke and Parkinson’s disease, were also significantly more common among adults with autism. Future research is needed to understand the social, healthcare access, and biological factors underlying these observations.

Primary Care for Adults on the Autism Spectrum

Autism spectrum disorder (ASD) is defined by differences in social communication and restricted, repetitive patterns of behavior, interests, or activities. Skills and challenges can change depending on environmental stimuli, supports, and stressors. Quality of life can be improved by the use of accommodations, assistive technologies, therapies to improve adaptive function or communication, caregiver training, acceptance, access, and inclusion. This article focuses on the identification of ASD in adults, referrals for services, the recognition of associated conditions, strategies and accommodations to facilitate effective primary care services, and ethical issues related to caring for autistic adults.

Barriers to healthcare: Instrument development and comparison between autistic adults and adults with and without other disabilities.

Our objective was to use a community-based participatory research approach to identify and compare barriers to healthcare experienced by autistic adults and adults with and without other disabilities. To do so, we developed a Long- and Short-Form instrument to assess barriers in clinical and research settings. Using the Barriers to Healthcare Checklist–Long Form, we surveyed 437 participants (209 autistic, 55 non-autistic with disabilities, and 173 non-autistic without disabilities). Autistic participants selected different and greater barriers to healthcare, particularly in areas related to emotional regulation, patient-provider communication, sensory sensitivity, and healthcare navigation. Top barriers were fear or anxiety (35% (n = 74)), not being able to process information fast enough to participate in real-time discussions about healthcare (32% (n = 67)), concern about cost (30% (n = 62)), facilities causing sensory issues 30% ((n = 62)), and difficulty communicating with providers (29% (n = 61)). The Long Form instrument exhibited good content and construct validity. The items combined to create the Short Form had predominantly high levels of correlation (range 0.2–0.8, p < 0.001) and showed responsiveness to change. We recommend healthcare providers, clinics, and others working in healthcare settings to be aware of these barriers, and urge more intervention research to explore means for removing them.

Primary care for adolescents with developmental disabilities.

Disability is a natural part of the human experience. To maximize potential, adolescents with disabilities require multidisciplinary transition planning and life-skill training. Health care professionals can reduce barriers to accessing health care. They can encourage self-determination and connect patients to self-advocacy organizations. They can facilitate smooth transitions to adult health care services. Careful descriptions of a patients baseline traits and function are critical, not only to assist in person centered planning processes, but to ensure that new caregivers and clinicians have the information they need to recognize changes in function or behavior that can signal illness.

Capsule Commentary on Fortuna et al., Health Conditions and Functional Status in Adults with Autism: A Cross Sectional Evaluation

S tate and federal policy prioritizes serving people with disabilities in the community as opposed to in institutions. But there has been little investment in developing the health services and trained workforce to deliver effective medical care in this setting. Many studies have shown that overall, community-based services and small, fully-integrated housing is superior to institutions in a variety of domains, including community participation, contact with family and community, and quality of life. However, the research is more mixed in the areas of medication, health, risks, and mortality. Social determinants of health and problems with access to medical, dental and behavioral health care contribute to health disparities. Fortuna and colleagues’ study expands our understanding of the health care and support needs of adults on the autism spectrum as they and their parents age. Autistic adults have higher rates of chronic medical conditions that require ongoing, medical attention, as well as significant, support needs for activities of daily living. Furthermore, most autistic adults live on their own or with family rather than in supervised residential settings. Due to advancements in federal Medicaid policy, the trend towards people with complex disabilities living in fully integrated homes will likely accelerate. The new Home and Community Based Settings regulation requires states to provide recipients of Medicaid-funded, long-term care with community options. Options must include the ability to choose service providers, housing, roommates and other relationships, supported employment in regular workplaces, and the ability to direct their own lives. Effective health care services and professional training requires the collaboration and leadership of autistic adults. To assist health care providers to serve the population, tools developed in collaboration with autistic adults have been developed by the Office of Developmental Primary Care (http://odpc.ucsf.edu) and the Academic-Autistic Spectrum Partnership in Research and Education (http://www. autismandhealth.org/). Also, review articles on primary care of transition age youth and adults are available to help clinicians and health systems provide culturally competent services to reduce health disparities and improve access to care.S tate and federal policy prioritizes serving people with disabilities in the community as opposed to in institutions. But there has been little investment in developing the health services and trained workforce to deliver effective medical care in this setting. Many studies have shown that overall, community-based services and small, fully-integrated housing is superior to institutions in a variety of domains, including community participation, contact with family and community, and quality of life. However, the research is more mixed in the areas of medication, health, risks, and mortality. Social determinants of health and problems with access to medical, dental and behavioral health care contribute to health disparities. Fortuna and colleagues’ study expands our understanding of the health care and support needs of adults on the autism spectrum as they and their parents age. Autistic adults have higher rates of chronic medical conditions that require ongoing, medical attention, as well as significant, support needs for activities of daily living. Furthermore, most autistic adults live on their own or with family rather than in supervised residential settings. Due to advancements in federal Medicaid policy, the trend towards people with complex disabilities living in fully integrated homes will likely accelerate. The new Home and Community Based Settings regulation requires states to provide recipients of Medicaid-funded, long-term care with community options. Options must include the ability to choose service providers, housing, roommates and other relationships, supported employment in regular workplaces, and the ability to direct their own lives. Effective health care services and professional training requires the collaboration and leadership of autistic adults. To assist health care providers to serve the population, tools developed in collaboration with autistic adults have been developed by the Office of Developmental Primary Care (http://odpc.ucsf.edu) and the Academic-Autistic Spectrum Partnership in Research and Education (http://www. autismandhealth.org/). Also, review articles on primary care of transition age youth and adults are available to help clinicians and health systems provide culturally competent services to reduce health disparities and improve access to care.

Supported health care decision-making for people with intellectual and cognitive disabilities

Supported Health Care Decision-Making for People with Intellectual and Cognitive Disabilities Corresponding Author: Clarissa Kripke, MD, FAAFP Clinical Professor, Family and Community Medicine Director Developmental Primary Care University of California, San Francisco 500 Parnassus Ave. MU3E, Box 0900 San Francisco, CA 94143 415-683-8792 cell/text Clarissa.Kripke@ucsf.edu http://odpc.ucsf.edu key words: supported decision-making; self-direction; disability; intellectual and developmental disability The published version can be found at: Kripke, C. Supported health care decision-making for people with intellectual and cognitive disabilities. Family Practice 2016. doi: 10.1093/fampra/cmw060

For Optimal Outcomes, Children Belong in Homes

In the Clinical Report “Out-of-Home Placement for Children and Adolescents With Disabilities,” Friedman and colleagues1 review options for placing children with disabilities in congregate care settings. However, the report omits discussion of the best interests of the child in selecting out-of-home options and fails to review and prioritize noninstitutional models of care. When families of origin are unable to provide adequate care, children with disabilities retain their right to receive care in … E-mail: kripkec{at}fcm.ucsf.edu