Program experiences of adults with autism, their families, and providers: Findings from a focus group study

Autism ◽  
2017 ◽  
Vol 22 (3) ◽  
pp. 345-356 ◽  
Author(s):  
Kaitlin H Koffer Miller ◽  
Mary Mathew ◽  
Stacy L Nonnemacher ◽  
Lindsay L Shea
Keyword(s):  
Autism Spectrum Disorder ◽  
Focus Groups ◽  
The United States ◽  
Autism Spectrum ◽  
Program Improvement ◽  
Spectrum Disorder ◽  
Direct Care ◽  
Care Staff ◽  
Focus Group Study ◽  
Adults With Autism

A growing number of individuals with autism spectrum disorder are aging into adulthood. In the United States, Medicaid is the primary payer for services for adults with autism spectrum disorder, yet there are few funded programs that provide dedicated supports to this population. This study examined the experiences of adults with autism spectrum disorder in two Medicaid-funded programs in Pennsylvania through focus groups. Researchers conducted 20 focus groups with a total of 36 adults with autism spectrum disorder, 32 family members, 32 direct care staff, and 20 program administrators. Using thematic analysis, we identified three themes: training needs, community engagement and socialization, and employment. There was a need for additional training to meet the varying needs of program participants including co-occurring diagnoses, sexuality, and long-term planning. Adults with autism spectrum disorder prioritized more individualized community activities based on their interests. Finally, barriers to and strategies for successful employment were discussed. It will be crucial for policy makers to utilize the findings to inform program improvement and development based on the experiences of individuals impacted by these services and systems directly. Additionally, researchers should use the findings from this study to design interventions for adults with autism spectrum disorder as it includes their voices.

scholarly journals Sex differences in employment and supports for adults with autism spectrum disorder

Autism ◽  
2019 ◽  
Vol 23 (7) ◽  
pp. 1711-1719 ◽  
Author(s):  
Julie Lounds Taylor ◽  
Leann Smith DaWalt ◽  
Alison R Marvin ◽  
J Kiely Law ◽  
Paul Lipkin
Keyword(s):  
Autism Spectrum Disorder ◽  
Sex Differences ◽  
Family Support ◽  
The United States ◽  
Autism Spectrum ◽  
Spectrum Disorder ◽  
Internet Survey ◽  
Adults With Autism ◽  
Males And Females ◽  
Course Outcomes

This study explored sex differences in employment, reasons for unemployment, benefits, and supports among a large, international sample of adults with autism spectrum disorder. The sample included 443 adults with autism spectrum disorder (60% female; 74% residing in the United States) who consented to be part of an autism research registry and completed an Internet survey. Outcome variables included current employment status, number of hours working, number of jobs in the past 5 years, reasons for unemployment, as well as the number of benefits received and the amount of financial support currently being received from families of origin. Using multiple regression models, we found that males and females were working at similar rates. Females were more likely than males to say that their unemployment was a result of choosing to withdraw from the labor market. Similar percentages of males and females reported receiving some form of benefits or family support, but of those receiving benefits/family support, males received more than females. These results are consistent with other studies finding subtle, but potentially important sex differences in life-course outcomes of individuals with autism spectrum disorder.

A scoping review of what is known of the physical health of adults with autism spectrum disorder

2016 ◽  
Vol 22 (1) ◽  
pp. 96-108 ◽  
Author(s):  
Andrew Cashin ◽  
Thomas Buckley ◽  
Julian N Trollor ◽  
Nicholas Lennox
Keyword(s):  
Autism Spectrum Disorder ◽  
Physical Health ◽  
Scoping Review ◽  
Health Assessment ◽  
The United States ◽  
Autism Spectrum ◽  
Spectrum Disorder ◽  
High Rate ◽  
Adults With Autism ◽  
Increased Risk

Little research has been carried out on the physical health of people with autism spectrum disorder (ASD). From the studies conducted with both children and adults, few studies have moved beyond retrospective record analysis and survey and conducted health assessment. The majority of the studies are from the United States of America with a small number conducted in Europe. A scoping review was conducted to determine what is known of the physical health of adults with ASD and to identify research gaps. In addition to studies of adults, this review includes studies of children to determine possible health trajectories. From the findings, it can be stated with confidence that people with ASD have a high rate of comorbidity and increased risk for chronic disease.

Transition to work: Perspectives from the autism spectrum

Autism ◽  
2017 ◽  
Vol 22 (5) ◽  
pp. 528-541 ◽  
Author(s):  
Darren Hedley ◽  
Ru Cai ◽  
Mirko Uljarevic ◽  
Mathilda Wilmot ◽  
Jennifer R Spoor ◽  
...  
Keyword(s):  
Autism Spectrum Disorder ◽  
Focus Groups ◽  
Training Programme ◽  
Autism Spectrum ◽  
Spectrum Disorder ◽  
Adults With Autism ◽  
Transition To Work ◽  
Work Related ◽  
Social Difficulties ◽  
The Individual

To improve employment outcomes for adults with autism spectrum disorder, it is necessary to identify factors associated with successful transition to work from the perspectives of the individual and from those who work with or support them. This study involved focus groups with adults with autism spectrum disorder ( n = 9) participating in a 3-year employment and training programme, as well as focus groups with family members ( n = 6), support staff ( n = 7) and co-workers ( n = 6). The aim was to gain better understanding of the experience of transition to work, barriers and also the factors that promote workplace success. Main themes included factors that facilitated success at work ( Enablers), barriers to success ( Challenges) and programme outcomes ( Outcomes). Organisation support, advice from co-workers, supportive leadership, allowance of environmental modifications and presence of a consultant were identified as enablers that most facilitated success at work. Challenges included task-related difficulties, individual factors, social difficulties and distractibility, not managing work-related stress, and being perceived to be too frank. Outcomes were rated as positive and encompassed work-related outcomes, as well as outcomes related to sense of purpose, achieving personal independence and improvements in social relationships, both with work colleagues and within families.

Ten weeks in: COVID-19-related distress in adults with autism spectrum disorder

Autism ◽  
2021 ◽  
pp. 136236132110059
Author(s):  
Ryan E Adams ◽  
Shuting Zheng ◽  
Julie Lounds Taylor ◽  
Somer L Bishop
Keyword(s):  
Mental Health ◽  
United States ◽  
Autism Spectrum Disorder ◽  
Negative Impact ◽  
The United States ◽  
Autism Spectrum ◽  
Anxiety Symptoms ◽  
Spectrum Disorder ◽  
Adults With Autism ◽  
Health Symptoms

This study examined COVID-19-related distress among adults with autism spectrum disorder and its associations with demographic and mental health information. A sample of 275 adults (ages 18–35) in the United States, all capable of providing self-reports, was recruited from a large national registry. Adults completed online surveys of mental health symptoms just before COVID-19 was declared a pandemic. Two months later, they completed the same surveys of mental health symptoms, and also reported about distress they had experienced as a result of the COVID-19 pandemic. Nearly two-thirds (65.9%) endorsed some form of COVID-related distress with a little over half reporting any individual form of distress. Although depressive and anxiety symptoms did not change from Time 1 to Time 2 on average, higher levels of COVID-related distress was associated with an increase in depressive and anxiety symptoms between Time 1 and Time 2. In addition, women and those who reported higher anxiety symptoms before the pandemic were more likely to report some form of COVID-related distress. The findings suggest that as this global crisis continues to unfold, it will be critical to ensure that adults with autism spectrum disorder who were experiencing mental health challenges prior to the pandemic receive appropriate monitoring. Lay abstract This study used data collected from 275 adults in the United States with autism spectrum disorder both before the pandemic and then 10 weeks into the pandemic to assess COVID-19-related distress and its impact. Two-thirds of those surveyed reported some type of distress related to the pandemic (i.e. difficulty coping or negative impact on emotional and mental health). While there were no changes in depressive and anxiety symptoms from prior to COVID-19 to 10 week later in the group as a whole, self-reported distress predicted increases in both anxiety and depression across the two timepoints. Furthermore, adults with higher levels of anxiety prior to the pandemic were more likely to report distress, and women were more likely to report a negative impact of the pandemic on their emotional and mental health. Findings highlight the importance of monitoring with adults with autism spectrum disorder to assess their need for mental health support, and providing ongoing support to those who already experience anxiety even before the pandemic.

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