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Summary of Advances Cover 2015
Summary of Advance
In Autism Spectrum Disorder Research
Question 6: What Does the Future Hold, Particularly for Adults?

The health status of adults on the autism spectrum
Croen LA, Zerbo O, Qian Y, Massolo ML, Rich S, Sidney S, Kripke C. Autism. 2015 Oct;19(7):814-23. [PMID: 25911091]

Recognizing that children with ASD have higher rates of co-occurring medical and psychiatric illnesses compared to the general pediatric population, the authors decided to explore whether this is also the case in adults with ASD, compared with the general population. The authors point out that a better understanding of health status in the growing population of adults diagnosed with ASD might help lead to the identification of specific interventions that would improve the delivery of effective health care to this population. Participants in this study included 1,507 adults with ASD who were members of Kaiser Permanente Northern California (KPNC) and a sampling (15,070) of other adult members of KPNC who did not have ASD ("the control group"). The researchers found that more than half of the adults with ASD in this study were diagnosed with a psychiatric condition, and the risk of having various psychiatric conditions (e.g., depression, schizophrenia) was consistently higher for adults with ASD than for controls. In addition, women with ASD were diagnosed more often (than were men with ASD) with anxiety, bipolar disorder, dementia, depression, schizophrenic disorders, and suicide attempts, but less often with obsessive compulsive disorder, attention deficit disorder, alcohol or drug abuse, and drug dependence. The findings of a high prevalence of psychiatric disorders among adults with ASD are consistent with those of previous, smaller studies. The conditions that were diagnosed less often among adults with ASD than among the control population included alcohol abuse dependency, infections, and genitourinary disorders. The medical conditions diagnosed more often among adults with ASD included immune conditions, gastrointestinal and sleep disorders, seizures, obesity, abnormal amounts of fats in the blood, high blood pressure, and diabetes—as well as some rarer conditions, such as stroke and sleep disorders. The authors conclude that further research is needed to understand the social, health care-related, and biological factors underlying the observations reported in their research paper. For example, some of the social and communication impairments (e.g., isolation, discrimination, sensory sensitivities) accompanying ASD may prevent individuals from accessing preventive health care or accurately reporting pain or other symptoms.

The costs and benefits of employing an adult with autism spectrum disorder: a systematic review
Jacob A, Scott M, Falkmer M, Falkmer T. PLoS One. 2015 Oct 7;10(10):e0139896. [PMID: 26445345]

Current estimates are that 50 to 75% of adults with ASD are unemployed, despite a desire by adults with ASD to find employment. Recognizing that few studies have looked at the cost-benefit ratio of employing adults with ASD—and even fewer have looked at this issue from the viewpoint of employers—the researchers leading this study undertook a review of existing studies. Their aim was to examine the costs, benefits, and cost-benefit ratio of employing adults with ASD from (1) a societal perspective and (2) the perspective of employers.

The authors identified 11 articles describing scientific studies that focused on competitive employment of adults with ASD, including casual employment (usually temporary with no regular hours or benefits); these studies included a total of 67,251 participants. Four of the studies were cohort studies (following a group of people over time), three were case-control studies (comparing adults with ASD with neurotypical adults), three were descriptive, and one was a correlational study (studying whether two factors can be related to each other). In addition, four of the studies described the costs to governments when employing adults with ASD, four explored the costs to society when employing adults with ASD, and three explored the cost-benefits to the employer of adults with ASD. Reviewing the studies that looked at government costs showed that employing individuals with ASD, even with government support for their employment, actually saves government costs by reducing the number of benefits that people with ASD need when they are unemployed. Other studies showed that when assessing the costs of vocational rehabilitation services per wages earned by individuals with ASD, ASD is more costly than other conditions (such as traumatic brain injury, mental illness, and learning disabilities). However, adults with ASD who receive these supportive services have a high likelihood of subsequently gaining employment, and the costs to society (including adult care) are more than paid back when adults with ASD become employed. One benefit to employers described in three studies is that adults with ASD can maintain consistent hours worked per week for significant periods of time, demonstrating reliability. However, the authors also conclude that further studies are warranted to more thoroughly explore the benefits, costs, and cost-benefit ratio of employing an adult with ASD from the perspective of employers.

National Autism Indicators Report: Transition into Young Adulthood
Roux AM, Shattuck PT, Rast JE, Rava JA, Anderson KA. Philadelphia, PA: Life Course Outcomes Research Program, A.J. Drexel Autism Institute, Drexel University, 2015. [Available at:]

Young adults with autism have a difficult time transitioning to adulthood after high school, when many of their supports and services required through the Federal law in high school are dropped. It can be difficult for a young adult with ASD after high school to find steady employment, continue school, live independently, socialize and participate in the community, or stay healthy and safe. This report describes a collection of national indicators detailing the transition from adolescence to young adulthood for those with ASD. Data used for this study was from the U.S. Department of Education’s National Longitudinal Transition Study-2, which collected youth and parent responses to survey questions every 2 years from 2000–2009. This study reports on outcomes of young adults in the areas of transition planning, services, health and mental health, postsecondary education, employment, living arrangements, social and community participation, and safety and risk. A major finding for transition planning was that only 58% of youth with ASD had a transition plan in place by the federally required age. For young adults’ part of the services cliff, nearly 26% of young adults with ASD received no services that could help them become employed, go on to post-secondary education, or live independently. Among those with ASD, 60% had at least two health or mental health conditions as well as ASD. After high school, only 36% of young adults with ASD ever attended postsecondary education—including 2-year or 4-year colleges or vocational education. For employment, only 58% of young adults with ASD worked for pay outside the home after high school and into their early 20s, which is much lower than young adults with other disabilities. After high school, most young adults move out of their parent or guardian’s home. For young adults with ASD, only one in five ever lived independently between high school and their early 20s. Among the outcomes young adults hope to achieve after high school, is participating and socializing within their community. However, one in four young adults with ASD is socially isolated, meaning they never saw or talked with friends or were never invited to social activities within the last year. Lastly, the safety and well-being of young adults with ASD is a crucial part of them having successful outcomes. However, nearly 27% of youth engaged in wandering behavior—putting them at risk of harm or becoming lost. Although the report does not explain why and how these are the outcomes for transition-age youth with ASD, it addresses the gaps in outcomes for these youth and gives guidance for future research to address the needs of young adults transitioning out of high school.

High rates of parkinsonism in adults with autism
Starkstein S, Gellar S, Parlier M, Payne L, Piven J. J Neurodev Disord. 2015;7(1):29. [PMID: 26322138]

Although autism is a disorder that impacts an individual throughout his or her lifetime, few studies have looked at older adults with ASD and the additional conditions they may develop, including parkinsonism and Parkinson’s disease (PD)—a progressive disorder of the nervous system that affects movement, often causing tremors. The current study grew out of a broadly descriptive study the same researchers began years ago of adults 50 years of age and older with ASD. As this descriptive study progressed, the current study researchers observed what seemed to be high rates of parkinsonism signs among a small number of their ASD adult subjects (Study I). They therefore went on to assess signs of parkinsonism in a second sample of ASD adult subjects who were 40 years of age or older (Study II). The final study sample included 56 individuals with ASD 40 years or older (19 from Study I and 37 from Study II).

All study subjects were assessed for cognitive level and motor symptoms of PD; a diagnosis of PD requires that a patient display bradykinesia (a slowness of movement characteristic of parkinsonism) as well as rigidity, resting tremor, or postural instability. This study found elevated rates of parkinsonism in both samples, with three of 19 (Study I, 16%) and 12 of 37 (Study II, 32%) subjects having met the diagnostic criteria for PD. However, seven subjects in Study I and 29 subjects in Study II were taking antipsychotic medications that can cause Parkinson-like symptoms. The two studies were therefore combined due to low numbers. Of the 20 subjects who were not taking neuroleptic medications, four (20%) met the diagnostic criteria for parkinsonism, a diagnosis that was confirmed by independent community-based neurologists. The rate of parkinsonism in the general population is below 1%, considerably lower than the 20% found in this sample, which suggests that there is a higher rate of parkinsonism among adults 40 or older with ASD than in the general population. In addition, if current study findings are confirmed, medical science can begin to examine and understand the underlying biological connections, if any, between ASD and parkinsonism.

Longitudinal patterns of employment and postsecondary education for adults with autism and averagerange IQ
Taylor JL, Henninger NA, Mailick MR. Autism. 2015 Oct;19(7):785-93. [PMID: 26019306]

In this study, researchers focused on one particular set of adults with ASD—those with average-range IQs (intelligence quotients) and no diagnosed intellectual disabilities. The aim was to determine the long-term success of these ASD adults in postsecondary education participation and competitive employment. The 73 adults who were followed over 12 years were from families that were part of a larger longitudinal study. Although two-thirds of the adults with ASD participated in competitive employment/postsecondary education during the study, fewer than 25% were found to have maintained these activities consistently over the study period. It was also uncommon for those who had received postsecondary education to have found work in their field of study, many had low rates of employment even after receiving their degree, and those who found employment were often in entry-level jobs. These results suggest the need for more services and supports to help adults successfully make the transition between postsecondary education and employment.

The study also looked at factors that could potentially correlate with different patterns of employment and postsecondary education participation by adults with ASD over time; these included whether the individual with ASD was male or female, maternal and paternal levels of education, activities of daily living, maladaptive behaviors, autism symptoms, level of family support, and maternal mood (depressive symptoms, anxiety, or pessimism). Individuals with ASD who were consistently or sometimes engaged in postsecondary education/ competitive employment had lower levels of some negative behavioral characteristics, including maladaptive behaviors and autism symptoms, relative to those who were never engaged. However, there were no differences in behavioral characteristics between those who were consistently engaged and those who were only sometimes engaged. Consistent with previous findings, this study found differences between men and women with ASD in the consistency of their engagement in postsecondary education/competitive employment. None of the 15 women with ASD in this study were found to be consistently engaged throughout the study period, while nearly one-third of the men with ASD were, yet there were few behavioral differences between the men and women. Familial context could also influence the stability of an individual’s engagement in postsecondary education/competitive employment. For example, a higher paternal education level indicated a greater likelihood of the adult child with ASD being competitively employed. The researchers also recommend that future studies expand their scope to examine the potential effects of both social factors and individual characteristics on outcomes for adults with ASD.

Question 6

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