Autistic Adult Health and Professional Perceptions of It: Evidence From the ASDEU Project

Abstract

The Autism Spectrum Disorders in the European Union (ASDEU) survey investigated the knowledge and health service experiences of users and providers to generate new hypotheses and scientific investigations that would contribute to improvement in health care for autistic adults. An online survey designed for autistic adults, carers of autistic adults, and professionals in adult services was translated into 11 languages and distributed electronically by organizations and in-country adult service facilities in 2017; 522 autistic adults, 442 carers, and 113 professionals provided answers to the health questions. Professionals, the majority in non-medical services, appeared to be poorly informed about whether certain co-occurring conditions were more frequent in autistic adults than typical adults-especially some medical conditions, suicide attempts, accidents, and pain. A minority of autistic adults reported preventive health behaviors such as routine health check-ups. The majority of users and providers expressed the desire to make health care services more user-friendly for autistic adults. Among the three groups, <20% of responders knew an organization or clinician which has developed a way to monitor health, and prevent poor health, that works well for adults on the autism spectrum. The results point to means for better management of co-occurring conditions associated with autism in adulthood in order to reduce hospital admissions and potential areas of improvement in health and social services for autistic adults. Specifically, efforts should be focused on (1) professionals' education on risks for co-occurring conditions in autistic adults; (2) promoting preventive health behaviors; (3) making services user-friendly for autistic adults and their families; and (4) encouraging knowledge of good local services.

Keywords: adults; autism spectrum disorder; co-occurring conditions; health; services.

Figure 1

Health profile in autistic adult. GI, gastrointestinal; COPD, chronic obstructive pulmonary disease; ADHD, attention-deficit hyperactivity disorder. Radar chart plots of the answers “YES,” “NO,” and “Do not know” at the following questions: “Since you became an adult … have you been diagnosed by a doctor with:” (autistic adults, blue line); “In the last 2 years, has the autistic adult been diagnosed or treated by a doctor for:” (carers, orange line) and “… do you believe that the following conditions are more frequent in autistic adults, compared with adults not on the autism spectrum?” (Professionals, gray line). Values expressed as percentages. N autistic adults 521 to 522; N carers 437 to 440; N professionals: 113. Infection is not displayed in the figure since it is not a chronic condition.

Figure 2

Differences in rates of chronic health conditions reported by autistic adult males and females. GI, gastrointestinal; COPD, chronic obstructive pulmonary disease; ADHD, attention-deficit hyperactivity disorder. *p < 0.05; **p < 0.005.

Figure 3

Characteristics of the autistic adult's most recent hospital contact in the last 2 years. GI, gastrointestinal. Flowchart summarizing percentages of positive responses given by the autistic adults and carers to the survey section related to the type/reason for most recent hospital contacts. “Do not know” answers are not displayed.

Figure 4

Reason for most recent hospital contact. GI, gastrointestinal; COPD, chronic obstructive pulmonary disease; ADHD, attention-deficit hyperactivity disorder. Radar chart plots of the answers “YES,” “NO,” and “Do not know” at the following questions: “What was the reason for the most recent hospital contact?” (autistic adults, blue line); “What was the reason for the adult's most recent hospital contact?” (carers, orange line) and “… Do you believe that the following reasons for hospital contacts are more frequent in autistic adults, compared with adults not on the autism spectrum?” (Professionals, gray line). Values expressed as percentages. N autistic adults: 273 to 274; N carers: 187 to 200; N professionals: 108. Infection is not displayed in the figure since it is not a chronic condition.

Figure 5

Health behavior profile reported by autistic adults, carers, and professionals (A,B). Routine pattern for breast exams and cervical smears were collected only from autistic adult females (self-reported answers or reported by carers). N autistic adults: 515 to 342; N carers: 124 to 437; N professionals: 112 (A). N carers: 437; N professionals: 113 (B). In (A), professionals answered YES if they believed the characteristic was LESS frequent in autistic than non-autistic adults. In (B), they answered YES if they believed that the characteristic was MORE frequent in autistic than non-autistic adults.