Creating Accessible Survey Instruments for Use with Autistic Adults and People with Intellectual Disability: Lessons Learned and Recommendations.

Unlabelled: Despite growing appreciation of the need for research on autism in adulthood, few survey instruments have been validated for use with autistic adults. We conducted an institutional ethnography of two related partnerships that used participatory approaches to conduct research in collaboration with autistic people and people with intellectual disability. In this article, we focus on lessons learned from adapting survey instruments for use in six separate studies.

Adults with Developmental Disabilities: A Comprehensive Approach to Medical Care.

Developmental disabilities are attributable to a cognitive impairment, physical impairment, or both. They manifest during the developmental period from birth to early adulthood, and are likely to continue indefinitely. The life expectancy of most persons with developmental disabilities now approaches that of the general population.

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).

The Development and Evaluation of an Online Healthcare Toolkit for Autistic Adults and their Primary Care Providers.

Background: The healthcare system is ill-equipped to meet the needs of adults on the autism spectrum.

Objective: Our goal was to use a community-based participatory research (CBPR) approach to develop and evaluate tools to facilitate the primary healthcare of autistic adults.

Design: Toolkit development included cognitive interviewing and test-retest reliability studies.

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.

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.

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.

Custom vs. prefabricated orthoses for foot pain.

Compared with placebo or sham, custom-made foot orthoses modestly reduce foot pain from pes cavus (high arch), arthritis, plantar fasciitis, and painful hallux valgus. However, there is no evidence that custom orthoses are more effective than prefabricated ones.