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Summary of Advances

In Autism Research



Self-reported parkinsonism features in older autistic adults: A descriptive study.
Geurts HM, McQuaid GA, Begeer S, Wallace GL. Autism. 2021 Jun 21:13623613211020183. [PMID: 34154378]


Many older autistic adults without intellectual disabilities report having more symptoms associated with Parkinson's disease, such as stiffness and slow movements.

Background: Parkinson's disease affects the nervous system (i.e., the body's "command center") and parts of the body controlled by the nerves. Some studies have suggested that adults with autism may have motor symptoms similar to Parkinson's disease-such as stiffness, tremors, and unstable posture-more often than adults without autism. This set of symptoms is known as "parkinsonism." However, it can be difficult to distinguish parkinsonism from the effects of medications that some adults with autism take. This study sought to evaluate how often adults with autism report having parkinsonism and to identify any distinguishing features in those who do have parkinsonism.

Methods & Findings: This study examined two groups of autistic adults between 50 and 83 years of age. One group of 296 adults was from the Netherlands and the other group of 209 adults was from the U.S. The study used a self-report questionnaire to ask participants whether they were experiencing symptoms related to parkinsonism, such as "Do you have trouble buttoning buttons or dressing?" and "Have you ever noticed stiffness in your legs?" Adults with autism in both the Netherlands and U.S. groups reported experiencing notably more rigidity, stiffness, and slowness compared to adults without autism. Autistic adults from the Netherlands group indicated that these motor issues were not present in childhood but rather developed later in adulthood. The researchers also found that autistic adults with parkinsonism in the Netherlands group, but not the U.S. group, had more medical health issues and fewer cognitive issues. In both countries, there were no differences between adults with and without parkinsonism in terms of educational level, income level, or medication use. Specifically, there were no differences in the use of psychotropic medications (e.g., antidepressants, anti-anxiety medications, stimulants, antipsychotics, and mood stabilizers).

Implications: Findings from this study suggest that middle-aged and older adults with autism may be more likely to have symptoms of parkinsonism. However, it is important to note that the study did not include a standardized autism assessment to confirm the self-reported clinical diagnoses of each participant. Future research could use this study's methods to screen individuals quickly and cost-effectively for parkinsonism features and track aging individuals with autism to observe whether and when they develop Parkinson's disease. Overall, this study adds to the knowledge base around aging-related concerns among older autistic adults.

Service Use and Unmet Needs Among Adults with Autism Awaiting Home- and Community-Based Medicaid Services.
Schott W, Nonnemacher S, Shea L. J Autism Dev Disord. 2021 Apr;51(4):1188-1200. [PMID: 32671666]


In one state-wide study, over half of adults with autism on waiting lists for HCBS had unmet service needs, with levels of need particularly high among African Americans, Hispanics, and adults over the age of 21.

Background: Once they have aged out of the educational system, many adults with autism face additional barriers to accessing services and have significant unmet service needs in areas such as self-care, household activities, and vocational supports. This problem is particularly pressing for adults seeking Medicaid-funded home- and community-based services (HCBS), for which there are often long waiting lists. Medicaid currently provides over 2.5 million people with HCBS through state waiver programs, yet nearly half a million individuals with intellectual and developmental disabilities, such as autism, are currently on waiting lists for HCBS. This study sought to better understand the service needs of adults with autism who are on waiting lists for HCBS.

Methods & Findings: This study examined data from the Pennsylvania Autism Needs Assessment, a survey that was sent to individuals with autism and their caregivers living in the state who were on a waiting list for Medicaid-funded HCBS programs. In total, 227 individuals with autism responded to the survey, as well as 396 caregivers. Although many individuals waiting for Medicaid-funded HCBS were receiving some services, the researchers found that over half of autistic adults reported unmet needs for mental health services and more than 60% reported unmet needs for functional supports (e.g., physical therapy, occupational therapy, social skills therapy, and speech therapy) and employment support services. There were also important age and racial disparities in levels of unmet needs and services received. African American adults were more likely to report unmet needs of all kinds. Both African Americans and Hispanics had substantially higher odds of having unmet employment support needs and reported lower service receipt. Adults aged 22 and over received fewer services than people aged 18-21. In addition, adults living independently were more likely to report unmet physical health needs, suggesting a need for increased case management or service navigation support. Adults enrolled in school and adults who were employed were less likely to report unmet employment support needs.

Implications: This study highlights the unmet support needs of adults with autism who are on waiting lists for HCBS. These findings provide actionable information on what services are most needed and may assist in policy and program planning for Medicaid HCBS waiver programs and other service systems, including the education system. These results are also important to policymakers aiming to improve access to services for vulnerable groups, such as minority racial/ethnic groups and autistic adolescents transitioning into adulthood.

The prevalence and incidence of early-onset dementia among adults with autism spectrum disorder.
Vivanti G, Tao S, Lyall K, Robins DL, Shea LL. Autism Res. 2021 Oct;14(10):2189-2199. [PMID: 34378867]


Medicaid data suggests early-onset dementia is more prevalent among adults with autism compared to the general population.

Background: It is unclear whether older adults with autism have a higher risk of being diagnosed with early-onset dementia (i.e., those who are diagnosed with dementia before age 65) compared to older adults without autism. In addition, many individuals with autism have co-occurring intellectual disability, which is a risk factor for early-onset dementia. Although previous research has highlighted the importance of understanding dementia in people with autism, studies have generated inconsistent findings.

Methods & Findings: This study used Medicaid data to examine the nationwide rate of early-onset dementia in individuals with autism and intellectual disability. The sample included over 1.2 million individuals aged 30 to 64 years divided into four groups: the general population, individuals with autism, individuals with intellectual disability, and individuals with both autism and intellectual disability. Individuals with autism only (4.04%), autism and intellectual disability (5.22%), and intellectual disability only (7.1%) all had higher rates of early-onset dementia compared to the general population (0.97%). Individuals with autism, regardless of the presence of intellectual disability, were approximately 2.2 times more likely to be diagnosed with early-onset dementia than the general population. Across all groups, risk factors associated with the increased prevalence of dementia were older age, depression, and cardiovascular disease. However, after adjusting for these risk factors, individuals with autism were still 2.6 times more likely to be diagnosed with early-onset dementia than the general population.

Implications: This study provides evidence that early-onset dementia is more prevalent in adults with autism and/or intellectual disability compared to the general population. Although people with only intellectual disability had the highest risk of early-onset dementia, people with autism and people with both autism and intellectual disability had higher rates of early-onset dementia than the general population. These findings do not support previous hypotheses that autism serves as a "safeguard" against dementia and related issues. It is possible that autistic individuals have an increased risk of early-onset dementia due to biological factors related to autism and/or a lack of services and supports. These findings point to the importance of understanding and addressing specific needs in older individuals with autism and dementia, including the need for long-term care resources and appropriate support programs.

Identifying School-Based Factors that Predict Employment Outcomes for Transition-Age Youth with Autism Spectrum Disorder.
Wong J, Coster WJ, Cohn ES, Orsmond GI. J Autism Dev Disord. 2021 Jan;51(1):60-74. [PMID: 32356081]


Various factors, including daily living skills, family, and school-based supports can influence employment outcomes for transition-age youth on the autism spectrum.

Background: Youth with autism often encounter difficulties transitioning from school to the work force. Previous studies have found that adults with autism have the lowest employment rates compared to their peers with other disabilities. Because of these challenges and the growing population of youth with autism, there is an increasing need to provide appropriate services that help them transition to employment. However, limited research has investigated what employment-related services and interventions are most important during the high school years. Identifying specific factors that contribute to later employment outcomes (e.g., employment status, weekly wages, length of employment, job satisfaction) can help strengthen and improve these school-based transitional support services.

Methods & Findings: This study measured various characteristics of students and their families, as well as the school-based employment transition supports students received, to determine which characteristics and types of supports predicted later employment outcomes for youth with autism. This study used a secondary analysis (i.e., analyzing existing data from a previous study) of a nationally representative dataset composed of data from school programs as well as surveys of youth, parents, students, and teachers. Based on these data, researchers analyzed a group of students receiving special education services, ages 13 to 16 years and again later at 21 to 25 years. Daily living skills were measured using a parent survey, in which parents considered their child's ability to accomplish different tasks, such as using public transportation to get around town and reading and understanding signs. The study identified two distinct pathways that were related to later employment success for youth with autism. For young people with more adaptive skills (e.g., activities of personal care and daily living), academic performance most strongly influenced future employment. For young people with less adaptive skills, school-based employment transition supports, such as transition planning services, job shadowing, and work exploration, had the most influence on future employment. In both cases, parents' expectations for their children's future employment and parents' participation in future planning and school activities also played an important role in employment outcomes.

Implications: This study highlights the importance of identifying the specific kinds of employment supports that are most relevant for youth with autism. Individuals may have different support needs, and thus require different kinds of services in achieving their employment goals. The study also shows the complex relationships between student factors, family-related factors, school-based transition supports, and employment outcomes for youth with autism. In particular, it highlights the role of academic success, parent participation in special education, and school support services, all of which future research can explore in greater detail.

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