At-a-Glance

International survey results indicate several barriers, particularly communicating with providers and sensory challenges in waiting rooms, that may affect autistic adults in scheduling and completing primary care visits, leading to worse health outcomes.

Background: Many autistic adults have poorer health outcomes than their non-autistic peers, including reduced life expectancy, higher likelihood of chronic medical conditions, and higher likelihood of emergency room use and inpatient admission. Although autistic adults may have increased health needs, they often report that these needs are not adequately met. To examine autism-specific healthcare barriers, this international study including respondents from the United Kingdom, Ireland, and North America surveyed autistic adults about the challenges they face in accessing primary care and their associated adverse health outcomes.

Methods & Findings: An autistic-led research team created and administered a 52-item online survey to 507 autistic and 157 non-autistic adults. The survey included questions about specific barriers to accessing healthcare; reasons for delaying or avoiding primary care visits; and difficulties booking, planning, or waiting for primary care visits. The survey also asked about challenges people may encounter during their primary care visits, like difficulties with communication or sensory processing or a lack of available social supports. Lastly, the survey explored the impact of these barriers by asking study participants to report on the health consequences of their experiences. Eighty percent of the autistic adults surveyed reported barriers to visiting a primary care provider, primarily related to communication and sensory processing difficulties, compared to only 37% of the non-autistic adults. Significantly more autistic adults than non-autistic adults struggled with telephone calls to book appointments, delayed or avoided their appointments due to feeling misunderstood by their providers, and had difficulty communicating with their providers and reception staff. In addition, significantly more autistic adults felt uncomfortable in waiting rooms due to noise from other patients, crowding, bright lights, and other sensory challenges. Most adults surveyed reported that online or text-based appointment booking systems would improve their experiences, but autistic adults also reported that they preferred the option to email in advance their reason for consultation, the first or last appointments of the day, and quiet waiting rooms. Autistic adults who encountered difficulties reported that they often went untreated for physical and mental health conditions and were less likely to follow up on referrals to specialists.

Implications: These findings indicate that reducing health disparities may require adapting primary care practices to the unmet needs of autistic adults. For example, autism-friendly practices may employ a personalized approach to healthcare that includes administering staff autism training and providing patients with a healthcare access needs assessment. Offering flexible online booking and taking into consideration the sensory sensitivities of autistic individuals by increasing appointment lengths and making changes to reduce waiting room noise and crowding may improve the experiences of autistic patients.

At-a-Glance

Factors measured in childhood such as IQ, adaptive functioning, and degree of autistic traits may predict levels of independence, employment and education, and, to a lesser extent, physical health in autistic adults.

Background: Compared to their non-autistic peers, autistic young adults are less likely to live independently and more likely to have anxiety and depression. However, these outcomes vary significantly among autistic people. Identifying factors in childhood (e.g., cognitive function, adaptive behavior skills) that may predict adult outcomes (e.g., employment) can help identify which children will benefit most from interventions and support programs to help them succeed in adulthood. Longitudinal studies, which collect the same data on participants over long periods of time, can best identify these factors. Thus, this group of researchers sought to examine potential childhood factors and adult outcomes from longitudinal study data that followed autistic people from childhood into young adulthood.

Methods & Findings: Researchers examined data from the Special Needs and Autism Project (SNAP), a longitudinal study that follows outcomes among autistic people born between 1990 and 1991 in England. Childhood data from participants were collected between 2001 and 2003 on degree of autistic traits, adaptive functioning, IQ, language development, overall mental health, maternal mental health, and quality of life. Adult outcome data were collected from the same individuals between 2013 and 2015 on close friendships, employment status, education, living situation (e.g., living with family), anxiety, depression, and quality of life. Sixty-eight percent of autistic adults reported close friendships, while only 14% reported very little social interaction. Compared to their non-autistic peers, autistic adults were twice as likely to not be employed or pursuing education, and 29% were employed in supported or sheltered employment programs. Only 5% lived independently from family compared to 54% of their non-autistic peers, and 37% were receiving high levels of support (10+ hours of care, including overnight care). A lower degree of autistic traits and higher IQ during childhood were strongly associated with higher likelihood of living independently as a young adult and somewhat associated with likelihood of employment or education. However, other childhood measures (e.g., language development, maternal mental health, parental education level) did not predict adult outcomes. Once adjusted for childhood IQ and degree of autistic traits, higher childhood adaptive functioning was associated with multiple improved outcomes in adulthood (e.g., higher likelihood of employment and living independently).

Implications: These results suggest that autistic children with lower IQ and higher degree of autistic traits may particularly benefit from support programs and behavioral health support to assist them in becoming independent and pursuing adult employment or education. However, the results also show that commonly used measurements of autistic traits and childhood IQ may not be effective in predicting social or mental health difficulties in adulthood. Instead, adaptive functioning scores may better predict certain adulthood outcomes.

At-a-Glance

Autistic people diagnosed as adults are more likely to have co-occurring psychiatric conditions than those diagnosed as children, highlighting the importance of mental health supports for autistic people across the lifespan and the need for further research on how timing of autism diagnosis affects well-being.

Background: Research on autism has traditionally focused mostly on people diagnosed as children, with significantly fewer studies among people diagnosed with autism as an adult. Some studies suggest that people diagnosed with autism in adulthood are more likely to have other psychiatric conditions (e.g., anxiety, depression) than autistic people who were diagnosed in childhood. However, many of these studies had relatively few participants or focus on adults who depend on family or residential care. In contrast, the Simons Powering Autism Research Knowledge (SPARK) database has data from more than 100,000 autistic people, including more than 7,300 independent adults (i.e., without a conservator or guardian) and adults who were diagnosed later in life. Thus, the authors used the SPARK database to examine whether the prevalence of co-occurring psychiatric conditions differs based on age of diagnosis.

Methods & Findings: Researchers examined data from 4,567 adult (age 18 or older) participants in the SPARK database who are legally independent and previously completed medical and background questionnaires. These questionnaires provided data regarding sex at birth, age and types of diagnoses, and demographic data. Slightly more than half (52.5%) of participants were diagnosed with autism in childhood (prior to age 21). Compared to 48.4% of female participants, 58.2% of male participants were diagnosed with autism during childhood. Many participants were also diagnosed with other health conditions, including developmental delays and disorders (30.0%), sleep disorders (31.5%), and at least one psychiatric condition (86.8%). Mood disorders (e.g., depression, bipolar disorder) and anxiety were the most common co-occurring psychiatric conditions. Participants diagnosed with autism during adulthood were more likely to have other psychiatric conditions, particularly anxiety (59.7%) and depression (60.5%).

Implications: These results demonstrate that co-occurring psychiatric conditions are common among all autistic adults, and prevalence varies based on the age of autism diagnosis, suggesting that lifelong outcomes may be impacted by self-understanding and/or the presence or absence of appropriate supports in childhood and adolescence. More research is needed on whether differences in psychiatric conditions based on age of autism diagnosis is due to previous misdiagnoses (e.g., attributing autistic traits to social anxiety) or differences in risk for co-occurring conditions. Furthermore, undiagnosed children may face multiple difficulties during childhood (e.g., bullying, low self-esteem), and not having knowledge of autism as context for these difficulties may put them at greater-than-average risk of depression and anxiety. Given these health differences noted, it may be helpful to include age of autism diagnosis in the description of adult autistic samples for future studies.

At-a-Glance

Work readiness skills (e g , adaptability, success in daily routines) may improve employment outcomes for autistic adults.

Background: Autistic adults are at higher risk of unemployment and underemployment compared to their neurotypical peers. Recent research suggests that difficulties in certain work readiness skills (e.g., teamwork, organization) may be greater barriers to obtaining and retaining employment for autistic people than education or relevant experience. Autistic people may have strengths in some work readiness skills (e.g., persistence) but struggle with other skills (e.g., adaptability). Vocational rehabilitation and career support services can assist autistic adults in improving specific skills, thus helping to reduce employment disparities among autistic adults. Researchers sought to examine whether work readiness skills are associated with employment outcomes among autistic adults.

Methods & Findings: Researchers examined work readiness skills and employment outcomes among 281 autistic adults between the ages of 21 and 39. Participants completed a questionnaire which asked about five sets of relevant skills: (1) adherence to rules and requirements (e.g., meeting deadlines); (2) work style (e.g., adjusting to work environment); (3) ability to work independently; (4) routine daily activities (e.g., hygiene, driving or using public transportation); and (5) interpersonal skills (e.g., asking for help when needed). Participants also answered questions about potential sensory challenges in employment (e.g., discomfort with textures or types of lighting) and answered two qualitative questions exploring reasons for poor employment outcomes. Nearly half (49%) of participants were employed for more than 10 hours a week, while 8% received some form of economic assistance or sheltered employment and 43% were unemployed. Participants who were fully employed had higher scores for work style (e.g., skilled at adapting to change) and routine daily activities (e.g., effectively managing daily tasks) compared to unemployed participants. Responses to qualitative questions regarding work challenges identified three themes: (1) personal difficulties associated with autism (e.g., physical and mental health); (2) difficulties finding and keeping desired and fulfilling jobs; and (3) lack of autism-friendly workplaces and associated burnout. Recommended improvements included education for employers regarding autism, career and job training support for autistic adults, and autism-friendly accommodations (e.g., flexible scheduling).

Implications: These results suggest that workplace skills, particularly daily routines and adapting to workplace demands (including sensory challenges), can present barriers to employment for autistic adults. Vocational programs that address these challenges may improve employment outcomes among autistic people. Solutions to workplace challenges highlight the importance of education and empathy among employers to accommodate the needs of autistic employees rather than putting the onus solely on autistic people.

At-a-Glance

Medicaid data suggest that co-occurring health conditions among autistic adults, which occur more often than in non-autistic peers, differ based on race and ethnicity.

Background: Multiple studies suggest that autistic adults are at higher odds than their non-autistic peers of co-occurring medical and psychiatric conditions (e.g., epilepsy, anxiety), premature death, and poor physical health. Less is known about whether these co-occurring conditions differ based on race and ethnicity. Studies have previously identified racial and ethnic disparities in autism diagnosis and support, including age of diagnosis, access to support services, and quality of care. Medicaid serves as one of the largest insurers for mental health services in the United States and as one of the primary insurers for adults with disabilities, including autistic adults. Thus, analyzing Medicaid records can provide key insights into whether co-occurring conditions in autistic adults differ based on race and ethnicity.

Methods & Findings: Researchers analyzed claims data for adults ages 18-64 from the Medicaid Analytic eXtract (MAX) database for 2008 through 2012. The data included Medicaid claims among 155,617 adults with autism as well as 466,581 non-autistic adults with similar characteristics (e.g., age, prevalence of intellectual disabilities) for comparison. Claims data were analyzed for race, ethnicity, and multiple co-occurring physical and psychiatric conditions. Compared to adults without autism, autistic adults were four times as likely to have obsessive compulsive disorder (OCD), twice as likely to have attention deficit/hyperactivity disorder (ADHD), and twice as likely to have anxiety. Autistic adults also had higher odds than non-autistic adults for multiple other health conditions, including Parkinson’s disease, endocrine disorders, and epilepsy. The prevalence of co-occurring conditions among autistic adults differed based on race and ethnicity. Compared to White autistic adults, Black autistic adults were more likely to have schizophrenic disorder, drug abuse/dependence, and hypertension, and were less likely to have OCD, anxiety, cancer, and migraines. Hispanic autistic adults were more likely than their White counterparts to have schizophrenic disorder, obesity, diabetes, liver disease, hypertension, asthma, and autoimmune disorders. Compared to White autistic adults, Asian and Pacific Islander autistic adults were more likely to have gout, diabetes, Down syndrome, and hypertension, and were less likely to have alcohol and drug use/dependence, bipolar disorder, ADHD, and migraines.

Implications: Compared to their White counterparts, autistic adults from other racial and ethnic groups may face different physical and mental health challenges. Many of the racial and ethnic disparities among autistic adults (e.g., hypertension, cardiovascular disease) have also been observed in the general population. Racial and ethnic differences in co-occurring conditions – particularly for psychiatric conditions such as ADHD and anxiety – among autistic adults may be due to biases in diagnoses and access to mental health care. Addressing and reducing these disparities is crucial for improving health equity and providing holistic healthcare and support to autistic adults from all racial and ethnic groups.

At-a-Glance

Lack of lifelong Medicaid coverage for autistic adults in many states leads to higher rates of coverage loss and lower re-enrollment compared to non-autistic peers with intellectual disabilities.

Background: Medicaid is a crucial source of support for autistic adolescents and young adults as they transition from school-based support programs to adult care and assistance programs. However, while most state Medicaid programs support people with intellectual disabilities throughout their lifespans, fewer states provide lifespan support for people with an autism diagnosis. Autistic young adults without intellectual disabilities may be at particular risk of losing coverage because many states require that autistic adults demonstrate cognitive impairment to be eligible. The loss of Medicaid coverage can hinder access to key supports, such as occupational therapy, speech therapy, and social skills training that can help autistic adults achieve success in adult activities such as postsecondary education and work. Thus, continuous Medicaid coverage of support programs like those for adults with intellectual disabilities could be important for improving economic and employment outcomes among autistic young adults.

Methods & Findings: Researchers examined data from 2008 to 2012 in the Medicaid Analytic eXtract (MAX) database. Researchers analyzed Medicaid enrollment, disenrollment, and re-enrollment rates for people between the ages of 14 and 22 who had at least two outpatient or one inpatient claim associated with an autism or intellectual disability diagnosis. This dataset included 67,520 participants with autism (ASD-only), 120,804 participants with intellectual disabilities (ID-only), and 19,085 participants with both autism and intellectual disabilities (ASD+ID). Unlike their ID-only peers with, ASD-only adolescents and young adults were more likely to be enrolled in Medicaid under “poverty” or “other” categories rather than the “disability” category. From 2008 to 2012, 19.5% of ASD-only young adults disenrolled from Medicaid, compared to 16.0% of ID-only individuals and 8.5% of ASD+ID individuals. Among ASD-only young adult, most disenrollments occurred at age 19, with a second peak at age 21. Re-enrollment rates also differed between ASD-only young adults (34.6%), ID-only young adults (43.7%), and ASD+ID young adults (38.5%). For all three groups, re-enrollments peaked at age 18 and then declined with age.

Implications: These results demonstrate that autistic young adults without intellectual disabilities are at greater risk of losing Medicaid access compared to their peers with intellectual disabilities, with or without autism. Increased disenrollment at age 19 corresponds to when many states begin assessing eligibility (e.g., household income) as an adult rather than based on parental eligibility. Similarly, the second disenrollment peak at age 21 corresponds to when most states terminate the right to support through educational programs. Furthermore, the large number of autistic young adults enrolled in Medicaid under the “poverty” or “other” categories suggests that autism does not qualify as a disability under many state Medicaid programs, particularly in the absence of cognitive impairment. Ensuring that autistic young adults retain coverage may require changes to state Medicaid programs to expand accessibility for autistic people across the spectrum.