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Summary of Advances Cover 2019

Summary of Advances

In Autism Spectrum Disorder Research


Question 6: How Can We Meet the Needs of People with ASD as They Progress Into and Through Adulthood?

A 20-Year Study of Suicide Death in a Statewide Autism Population
Kirby AV, Bakian AV, Zhang Y, Bilder DA, Keeshin BR, Coon H. Autism Res. 2019 Apr;12(4):658-666. [PMID: 30663277]

Recent research has found that individuals with ASD are at higher risk for suicide, suicide attempts, and suicidal ideation. However, little work has been done to understand the incidence and specific characteristics of suicide risk in the ASD population. One study conducted in Sweden found that individuals with ASD are almost 8 times more likely to die by suicide than the general population and that females with ASD were more than 13 times more likely to die by suicide than females in the general population. These concerning statistics highlight the urgent need for population-based studies of suicide risk for ASD individuals in the United States.

The aim of this study was to examine the incidence and characteristics of suicide risk among people with ASD, using a large sample of population-based data from the state of Utah. The researchers predicted that suicide incidence would be significantly higher among the ASD population than the non-ASD population, and that suicide rates would be higher among females with ASD than females without ASD. Additionally, they hypothesized that ASD males would be more likely to use violent methods of suicide (e.g., firearm, blunt force injury) than ASD females.

Data were collected from 4 existing sources of statewide data that covered the time period of 1998–2017. These included: the Utah registry of autism and developmental disorders; the Utah Office of the Medical Examiner suicide surveillance data; the Utah Population Database that provided demographics, vital records, medical data, and genealogical data; and the Indicator-Based Information System for Public Health that contributed whole population statistics in Utah. Cumulative incidence rates of suicide deaths were calculated at 5-year intervals in both ASD and non-ASD populations. Additional analyses were conducted to identify differences in demographics and methods of suicide.

During the 19-year timeframe of the study, 49 people with ASD died by suicide. In the first 15 years of the study (1998–2012), the cumulative incidence of suicide did not differ between ASD and non-ASD populations.

However, this trend shifted in 2013–2017. During this time period, the cumulative incidence for suicide in the ASD population was 0.17%, which is significantly higher than the incidence of 0.11% in the non-ASD population. While there was no difference in cumulative incidence between males and females with ASD during this time period, there were significant differences between the female ASD population (0.17%) compared to the female non-ASD population (0.05%). The researchers also found that individuals with ASD who died by suicide were significantly younger than individuals without ASD who died by suicide (32.4 years vs. 41.8 years). Further, individuals who died by suicide in the ASD population were less likely to use a firearm as a means of suicide than individuals in the non-ASD population. Males and females with ASD did not differ in method of suicide.

This study was the first statewide, population-based study of suicide death among individuals with ASD, finding that individuals with ASD were at higher risk for suicide than individuals without ASD. The cumulative incidence of suicide among individuals with ASD increased after 2013. Because ASD diagnostic criteria has broadened over time, this may account for the low incidences of suicide that were observed at earlier time periods. Critically, females with ASD were over 3 times more likely to die by suicide than females without ASD, and younger individuals with ASD were twice as likely to die by suicide than younger individuals without ASD. This heightened risk of suicide, particularly for females and young individuals with ASD, suggests a critical need for further population-based research, as well as suicide prevention strategies tailored to the unique needs of people with ASD.

Loss in Services Precedes High School Exit for Teens with Autism Spectrum Disorder: A Longitudinal Study
Laxman DJ, Taylor JL, DaWalt LS, Greenberg JS, Mailick MR. Autism Res. 2019 Jun;12(6):911-921. [PMID: 31033222]

In the United States, children with ASD receive federally mandated school-based services under the Individual with Disabilities Education Act (IDEA). This federal mandate includes access to early intervention and special education services, such as speech language pathology services and Applied Behavioral Analysis (ABA) therapy, until the child receives a high school diploma or has aged out of the school system. It is commonly believed that as children with ASD transition out of public school and into young adulthood, they tend to experience a significant loss of these services—a “service cliff” that disrupts their transition and creates a vulnerable situation in which they experience significant unmet service needs.

Recent research suggests that children with ASD may experience a reduction in services even before this transition-aged “service cliff.” In this study, researchers sought to test this directly by examining changes in service use and levels of unmet service needs (defined as a service or level of service that was needed but not received) in individuals with ASD before, during, and after high school. Additionally, the researchers considered whether changes in service use and level of unmet service needs differ between individuals with and without co-occurring intellectual disability (ID). They predicted that individuals with ASD would experience a decline in services during the high school years, with a sharper decline after leaving high school. They further hypothesized that individuals without a co-occurring ID would experience greater change in service use and unmet service needs than individuals with co-occurring ID.

The researchers examined data from a longitudinal study, which collected data from families in Massachusetts and Wisconsin at 4 time periods between 1998 and 2012. The study included families of 204 individuals with ASD who were in high school or who had a high school exit date within the previous 18 months. At each time point, the researchers collected data from the primary caregiver on services received and unmet service need across nine service areas: physical therapy, occupational therapy, speech therapy, psychological and psychiatric care, crisis intervention programs, personal care services, recreational/social activities, transportation services, and respite care. They also collected the date that the student left high school (and stopped receiving school-based services), status of co-occurring ID, sex, residential status, and household income.

Fifty-nine percent of the individuals with ASD in the study sample had co-occurring ID. Overall, both those with and without co-occurring ID experienced reductions in service use during high school and after leaving high school. During the high school years, those without co-occurring ID experienced a sharper decline in service use than those with co-occurring ID. After high school exit, those without co-occurring ID continued to experience a consistent reduction in service use, but those with co-occurring ID experienced a drastic decline in services—a finding that is best exemplified by the “service cliff” that occurs upon leaving high school. Both those with and without co-occurring ID experienced a decline in service use for speech therapy, occupational therapy, and respite services both before and at the time of high school exit, but little change in service use for physical therapy, psychiatric services, and crisis services. Those with co-occurring ID experienced an increase over time in personal care services, transportation services, and recreational services.

When looking at unmet service need, the researchers found a greater level of unmet need after leaving high school than during high school, with no differences between those with and without co-occurring ID. A higher household income was associated with fewer unmet service needs. ASD individuals living with their family experienced greater unmet service needs than those living outside the family home.

The results of this study support prior research indicating that for individuals with ASD, declines in service use begin during the high school years and continue after leaving high school. Further, levels of unmet needs increase after leaving high school, signifying that continued supports are needed in the transition to adulthood. Declines in service use do not indicate declines in need. Individuals with ASD and co-occurring ID experience different needs during and after high school. For those without ID, service declines had already begun before high school exit and continued through the transition to adulthood; but for those with co-occurring ID, the time right around high school exit was an especially vulnerable period. Individuals with ASD and their families require strategies that can help ease their transition from high school and prepare them to advocate for continuing services into adulthood.

Use of Vocational Rehabilitation Supports for Postsecondary Education Among Transition-Age Youth on the Autism Spectrum
Rast JE, Roux AM, Shattuck PT. J Autism Dev Disord. 2019 Mar 8. [PMID: 30848406]

Youth with ASD transitioning into young adulthood may consider the prospects of increased independence through employment. Although many young adults with ASD have skills that are valued by employers, employment rates for this group are low. Post-secondary education (PSE), such as college or vocational training, can improve employment success and career outlook. However, few young adults with ASD enroll in these programs, as they may need additional supports and accommodations that often are not available at PSE institutions. One potential facilitator of PSE success is the use of vocational rehabilitation (VR) services. In the United States, VR provides job placement and training for individuals with disabilities, including those with ASD. The Workforce Innovation and Opportunity Act of 2014 (WIOA) included provisions for VR to promote enrollment in PSE through financial support, training, and advocacy.

In this study, the researchers sought to understand the use and impact of VR training in support of PSE and employment for transition-age youth (TAY) with ASD as compared to 1) TAY with non-ASD intellectual or developmental disabilities (IDDs), including Cerebral Palsy and traumatic brain injury, and 2) TAY with other disabilities, such as physical disabilities. They examined data from the United States Department of Education’s Rehabilitation Services Administration Case Service Report for 2015, focusing on young adults aged 14 to 24 who received VR services. The primary outcome was paid full-time, part-time, or self-employment within an integrated work setting (in which most employees are not individuals with disabilities) at the time of exit from VR training. They compared individuals who were receiving general VR services to those who were receiving VR specifically for PSE training, which included services to help the individual improve educationally or vocationally.

The researchers found that of those who were receiving VR services, only about one-fifth (18.3%) of TAY with ASD received VR training for PSE, which was lower than TAY with other disabilities (32%), but slightly higher than TAY with IDDs (15.3%). TAY with ASD who did receive VR PSE training were younger, less likely to have a significant disability, and less likely be receiving social security disability income or other on-the-job supports than TAY with ASD who did not receive VR PSE training. TAY with ASD who received VR PSE training had better employment outcomes and were 1.59 times more likely to exit the VR program with employment than those who did not receive VR PSE training.

These findings suggest that VR training for PSE increases the likelihood of employment for TAY with ASD, but it is an underutilized resource. Increased awareness of the educational training provided by VR may benefit TAY with ASD who want to pursue PSE. It can also help PSE become attainable for TAY with ASD who might not otherwise consider it. VR training can therefore connect TAY with ASD to the PSE opportunities that may improve employment outcomes and increase independence in adulthood.

Competitive Employment for Transition-Aged Youth with Significant Impact from Autism: A Multi-Site Randomized Clinical Trial
Wehman P, Schall C, McDonough J, Sima A, Brooke A, Ham W, Whittenburg H, Brooke V, Avellone L, Riehle E. J Autism Dev Disord. 2019 Mar 1. [PMID: 30825082]

Many young adults with ASD struggle to find or keep meaningful paid employment that occurs within an integrated setting. Many individuals with ASD are not employed, and those who are tend to be underemployed, employed without pay, work in a segregated work setting, or work for less pay than their peers. Few studies have been conducted to identify the key components of successful employment specifically for young adults with ASD. However, there is evidence that supported employment, which provides ongoing support and on-the-job training, can lead to improved employment outcomes. Customized employment extends the concept of supported employment by optimizing the strengths of the individual while minimizing barriers to success. Project SEARCH is a supportive employment program that assists youth and young adults with developmental disabilities, including ASD, in acquiring vocational skills. The program places high school students in transition-to-work internships that provide meaningful work experience benefitting both the student and the employer.

In this study, researchers added ASD-specific supports to the Project SEARCH program to determine if the additional supports improved employment outcomes for young adults with ASD. These supports included social communication training, provision of visual cues, and behavior support and self-regulation strategies. The target outcome was competitive employment that was paid minimum wage or higher within an integrated work setting, with the employee performing the same or similar tasks as those without disabilities.

The researchers conducted a randomized trial at four hospitals in Virginia to compare the Project SEARCH plus ASD support intervention against standard school-based services. Participants included 156 students with ASD between the ages of 18 and 21 who were randomized between the Project SEARCH plus ASD group and the control group of support as usual. The Project SEARCH plus ASD consisted of a 9-month program that placed students in an unpaid rotating internship within a local hospital. Concurrently, students received direct instruction from special education professionals to further enhance skill development and increase independence in the work setting. All members of the program team met regularly to coordinate training and student needs. After graduating from the program, students continued to receive employment support. The researchers gathered data at three time points: at the beginning of the school year, at graduation, and at a 1-year follow-up.

The Project SEARCH plus ASD supports intervention had a significant impact on employment outcomes. At graduation, 32% of individuals in the Project SEARCH plus ASD supports group were employed, as compared to 5% of individuals in the control group. At the 1-year follow-up, 73% of the individuals in the Project SEARCH plus ASD supports intervention were employed, as compared to 17% of individuals in the control group. Moreover, 90.6% of individuals from the Project SEARCH plus ASD supports group maintained employment across the 1-year-post-graduation period. The intervention ensured that students had a seamless transition from school-based services to community-based services as they entered adulthood, which contributed to the acquisition of meaningful paid employment after high school graduation. When comparing wages, hours worked, and weeks to employment between the two groups, the researchers found that individuals in the Project SEARCH plus ASD supports intervention worked on average more hours per week and were paid a higher hourly wage than individuals in the control group.

The results of this study support the effectiveness of a customized, supportive employment intervention for high school students with ASD. Large-scale implementation of this program could help reduce the high rates of unemployment among young adults with ASD, as well as provide the supports needed for continued, meaningful employment.

Question 6

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