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Adults with autism spectrum disorder (ASD) experience high rates of both unemployment and depression. Though job loss predicts increased risk of depression in the general population, studies have yet to directly examine this relationship among individuals with ASD. With the backdrop of rising unemployment due to COVID-19, we used a longitudinal design to examine whether employment changes predicted increasing depressive symptoms among young adults with ASD. Online surveys were collected from young adults with ASD at two times: just before widespread social distancing measures were adopted in the United States, and again 10 weeks later. Both time points included measurement of depressive symptoms (Beck Depression Inventory-2). At Time 2, COVID-related employment changes and the perceived impact of those changes on well-being were collected. Of the young adults who were employed at Time 1 (n=144), over one-third (37.5%) reported employment changes during the first 2 months of COVID-19. Most of this change was job loss or reductions in hours or pay ("job loss/reduction"). Controlling for Time 1 depressive symptoms, young adults who experienced job loss/reduction had significantly higher depressive symptoms at Time 2 than those without an employment change. Individuals' perceived impact of employment change also predicted depressive symptoms. These findings suggest that losing a job or experiencing reductions in hours or pay leads to worsening depressive symptoms among adults with ASD. Better supporting autistic adults in the workplace may not only decrease the likelihood of job loss, but also combat the exceedingly high rates of depression in this group. LAY SUMMARY: Though unemployment has been linked to mental health problems in the general population, this relationship is seldom considered among adults with autism. In this study, we found that adults on the autism spectrum who lost their jobs or experienced reductions in pay or hours during the first 2 months of COVID-19 had worsening depression compared to adults who did not have job changes. Our findings suggest that increasing access to employment may help alleviate poor mental health among autistic adults.

Many youth with autism spectrum disorder (ASD) face challenges accessing needed services as they transition to adulthood. The present study describes the development, feasibility and acceptability of a new intervention designed to teach parents of transition-aged youth with ASD about the adult service system and the most effective ways to access services and supports. As part of a randomized-controlled trial, the intervention—named ASSIST—was delivered to 91 participants in three states in the U.S. Results suggested that ASSIST is feasible and acceptable to participants. Though intended to be an in-person group-based program, due to COVID-19 restrictions ASSIST was primarily delivered online. Results and discussion explore the trade-offs and implications of these different treatment delivery modalities in relation to ASSIST. Supplementary Information The online version contains supplementary material available at 10.1007/s10803-021-05128-z.

Given the wide heterogeneity in the autism population, one challenge for intervention studies is to identify outcome measures that have similar meaning across individuals. This is particularly pronounced in intervention studies of adults with autism spectrum disorder, where outcomes such as employment, independence, or community living are common targets. However, these outcomes can be more challenging to obtain for those who have greater support needs, for example, and therefore may be more or less salient depending on the sample under study. Goal attainment scaling can help address this issue as it allows individuals to identify personally meaningful goals and track progress toward these goals. While goal attainment scaling is gaining popularity in the autism field as an outcome measure, most intervention studies that use goal attainment scaling have been situated in clinical or school settings. Generating reliable and scalable goals outside of these settings can be challenging. In this article, we describe the promise of goal attainment scaling for tailoring individualized outcomes among youth and adults with autism spectrum disorder and discuss the challenges of current goal attainment scaling methods in community-based intervention research. We then describe a new goal attainment scaling approach that is rigorous, practical, and can be used across research settings to measure individualized outcomes. Lay abstract Among people with autism—all who have the same diagnosis—there are major differences on a nearly limitless number of areas, such as language, daily living skills, intellectual ability, sensory difficulties, and physical and mental health diagnoses. Despite these many differences, the targeted outcomes of intervention studies are often measured the same way across autistic adults, including outcomes such as getting a job, achieving greater independence, or getting more services. People have different goals and abilities, and it is important to have a way for intervention studies to measure outcomes in a way that is more personal to each individual. To address this issue, we developed a new approach—called “Goal Attainment Scaling—Community-based” or GAS-CB—to measure individualized outcomes across different research settings. In this article, we describe the need for individualized outcomes in autism intervention research and current approaches to gathering these outcomes, with our discussion focused on a method called goal attainment scaling. We then describe reasons why current goal attainment scaling approaches might not be useful in intervention research that takes place in the community. Finally, we discuss a new goal attainment scaling approach (GAS-CB) that can be flexibly used for research participants with very different characteristics.

Depression is a common problem for adults on the autism spectrum, but little is known about depression-related service receipt in this group. To understand depression diagnostic and treatment status better, we collected information on current depressive symptoms, depression diagnosis, and treatment status of 315 young adults with a childhood diagnosis of autism from the Simons Foundation Powering Autism Research for Knowledge registry. About two-thirds (65.4%) of the adults had been diagnosed with depression, and 46.7% currently met clinical cut-offs for depression on depressive symptoms measures. Among the currently depressed, the majority (83.0%) had a formal depression diagnosis. Despite being no more likely than males to be currently depressed, females (biological sex) were more likely to have received a depression diagnosis. As for depression treatment, 58.5% of currently depressed adults were currently being treated, and 68% had previously received treatment. Medication was the most common form of treatment, followed by individual therapy. Likelihood of receiving depression treatment was higher among those with a formal depression diagnosis and with higher levels of education. Adults reported several barriers to accessing treatment for depression, including financial and insurance issues, accessibility to appropriate care, and professionals’ lack of understanding about depression in autism. Lay abstract Depression is common among adults on the autism spectrum, but little is known about the extent to which these adults living in the community access diagnostic and treatment services for depression. To address this gap, we surveyed 315 adults on the autism spectrum on depression symptoms, diagnosis, and services. About half of the sample had scores on standard depression measures that suggested they were currently depressed ( n = 147, 46.7%). Among the currently depressed, most of them had received a depression diagnosis from a professional. Depressed females were about 3.5 times more likely than depressed males to have a depression diagnosis. More than half of the currently depressed adults on the autism spectrum reported receiving depression treatment at the time of the study, while about two-thirds had previously received treatment. Those with a depression diagnosis were more likely to have received treatment, and those who had some education beyond high school were more likely to be currently receiving treatment. Financial and insurance issues were the most common barriers that adults reported in accessing treatment for depression.

Autistic individuals are at an increased risk for both sleep disturbances and depression. While studies in the general population and in autistic adults have drawn general links between sleep disturbances and mental health, few studies have examined the extent to which specific sleep problems may be implicated in the extremely high rates of depression among autistic adults. This study aimed to describe the patterns of sleep disturbances in autistic young adults, and their associations with depressive symptoms while controlling for relevant demographic factors. A sample of 304 legally independent adults (age 18-35 years old) with a childhood diagnosis of autism spectrum disorder self-reported on their average sleep behaviors during the past week and depressive symptoms on the Beck Depressive Inventory-II. A significant proportion (86.01%) of autistic young adults experienced at least one of the primary sleep disturbances of interest, including short total sleep time (39.59%), poor sleep efficiency (60.07%), and delayed sleep phase (36.18%). Additionally, lower sleep efficiency and delayed sleep phase were both associated with higher depressive symptoms. The associations between sleep and depressive symptoms identified in our study suggest that sleep treatments may hold potential for ameliorating depressive symptoms in autistic adults who also experience sleep problems. Further research using daily sleep diaries and objective measures of sleep behaviors, as well as longitudinal studies, are needed to understand how changes in sleep may relate to changes in depressive symptoms in autistic adults.

Currently available treatments for depression show limited effectiveness in adults with autism spectrum disorders (ASD) based on measures of symptom changes and clinician impressions. Perceived helpfulness is another metric that has been found to be useful for understanding treatment outcomes in the general population, but it has not yet been explored in adults with ASD. Thus, the current study collected online survey data to examine patient-perceived treatment helpfulness in a sample of 144 adults with ASD who reported that they were currently receiving community-based treatment for depression. Findings indicate that while there was variability in the levels of perceived helpfulness for both medication and individual therapy, most adults with ASD perceived treatment to be at least moderately helpful. Notably, adults with ASD reported having been in treatment for a prolonged duration (5 to 6 years). Ordinal logistic regression models showed that adults with more depressive symptoms perceived treatments to be less helpful (i.e., medications: odds ratio [OR] = 0.92, 95% confidence interval[CI] = 0.89-0.95; individual therapy: OR = 0.95, 95% CI = 0.92-0.99). Moreover, women perceived medication as more helpful than men (OR = 2.33, 95% CI = 1.13-4.82). Other individual (i.e., age, race, education level) and treatment (i.e., treatment length, concurrent treatment) characteristics were not significantly associated with perceived helpfulness. These findings suggest that future studies may want to use perceived helpfulness, in addition to traditionally used objective outcomes, to understand patients' treatment experience and evaluate depression treatments for adults with ASD. LAY SUMMARY: Adults with autism are much more likely to be depressed than those without autism; therefore, effective depression treatments are necessary to improve mental health outcomes in this group. This online survey study found that most adults with autism felt that the depression treatments they were receiving in the community (i.e., medication and individual therapy) were helpful. Females and those with fewer symptoms of depression felt treatments were more helpful compared with males and those with more symptoms of depression. Our findings suggest that when examining whether treatments for depression are effective, it may be important to measure adults' feelings about the helpfulness of the treatments in addition to measuring changes in symptoms of depression.

Recent evidence suggests that individuals with autism spectrum disorder (ASD) experience depression at rates approximately four times greater than the general population. Co-occurring mood problems, including depressive and bipolar disorders, are associated with negative outcomes such as lower quality of life, increased adaptive behavior impairments, and greater service use. This chapter discusses what is known about the presentation of unipolar and bipolar depression in people with ASD and describes challenges to establishing sound prevalence estimates of mood disorders in ASD as they relate to methodological design issues and diagnostic assessment practices. It also provides an overview of potential vulnerability factors in the development of depression in this population; these areas of vulnerability include characteristics such as chronological age, cognitive ability, and ASD symptom severity, as well as those individual differences that may represent more direct mechanisms, for example, maladaptive coping styles, attentional biases, social reward profiles, and predisposition to rumination. The current research on interventions specifically designed to treat mood in people with ASD is very limited. However, promising treatments include adapted cognitive behavioral therapy and mindfulness-based approaches. Though most of this chapter focuses on unipolar depression in ASD as the more well-studied mood disorder, the chapter also summarizes the small research base on bipolar disorder in the context of ASD. It ends with a call for improved screening, assessment, and evidence-based treatment options to address this significant public health problem in this special population.

There is substantial data pointing to evidence of heightened rates of psychotic experiences and schizophrenia spectrum disorders in individuals with autism spectrum disorder (ASD). Given overlapping genetics and neurobiology between the two disorders, the prevalence of this comorbidity is not surprising. And yet, psychosis in ASD has received relatively little attention in either the scientific or the clinical literatures. Following an introduction to the shared historical context of schizophrenia and ASD, this chapter reviews the diagnostic criteria for psychosis and the assessment tools available for evaluating symptoms. Difficulties in differentiating true psychotic symptoms from several hallmark ASD features, as well as in diagnosing psychosis in minimally verbal individuals with ASD, are highlighted, and recommendations for making this diagnostic distinction are offered. With regard to treatment, there is a striking absence of literature addressing how to treat psychosis when it presents in individuals with ASD. This chapter highlights best practice treatments for childhood-onset and adult schizophrenia and related disorders and discusses how these treatments might apply or need adaptation when treating an individual with ASD. Finally, this chapter offers recommendations for future research regarding the nature, prevalence, developmental course, assessment, and most effective treatments for schizophrenia and other psychotic disorders when they present in individuals with ASD.

Depression is both common and impactful in youth with autism spectrum disorder (ASD) and is swiftly growing in recognition as a major public health concern within the autism community. This article is intended to provide a brief overview of the prevalence, impact, presentation, and risk factors associated with cooccurring depression in children and adolescents with ASD. Clinical guidelines for the assessment and treatment of depression in the ASD population are offered in line with the small existing evidence base.