Promoting Quality of Life: Suggestions for Mental Health Care Providers Working with Young Autistic Adults.

There is a growing population of autistic adults in need of supports from a service delivery system that, at present, fails to accommodate their needs adequately and equitably. Unfortunately, there is a shortage of trained behavioral health service providers to meet the needs of young autistic adults. Quality of life (QoL), or one's perception of, and satisfaction with, life in relation to held goals and expectations, has been identified as a key outcome of interest by autistic self-advocates. By supporting autistic clients to hone their strengths and interests, integrate various aspects of their identity, identify goals, and connect to appropriate resources, providers can promote clients' self-knowledge and self-determination, in the service of improving QoL. In this Perspectives article, we offer concrete recommendations to mental health providers, including those who do not specialize in autism, with the goal of supporting implementation of evidence-based strategies that improve QoL and promote self-determination among young autistic clients.

Why is this topic important?: Mental health care providers who are not autism specialists often feel unable to help autistic adult clients. However, relying on specialists to provide treatment for autistic adults can delay access to needed care. There is a need for well-trained clinicians and other service providers who can effectively work with autistic adults. What is the purpose of this article?: Young autistic adults face many challenges related to transition into adulthood, including greater independence desires and external expectations. The early adult years are also a period of heightened risk for emerging mental health problems. The goal of this article is to offer guidance to mental health service providers on how to effectively support autistic adults, while respecting autonomy, identity, and diversity. The guidance we offer is drawn from research, clinical practice, and lived experience. What personal or professional perspectives do the authors bring to this topic?: In addition to an autistic adult and self-advocate, the authors are clinical researchers and clinicians with expertise in working with adolescents and adults as service providers. What is already known about this topic?: Although a wider range of effective intervention practices is needed, there are a growing number of scientifically based and respectful treatments now available to address mental health concerns and promote quality of life (QoL). Unfortunately, it is widely recognized that there is a shortage of providers who work with autistic clients. One reason for the shortage is that some highly capable and well-trained providers do not treat autistic clients. What do the authors recommend?: We recommend that providers focus on strengths, abilities, and potential rather than focus on perceived deficits when working with autistic clients, so that we as a society can better meet the service needs of the autistic community. Specifically, we encourage a focus on improving QoL, structuring services to focus on self-determination and empowerment, emphasizing intersectionality or existence of multiple identities with personal meaning, and helping clients and their families navigate service systems and supports that are available. How will these recommendations help autistic adults now or in the future?: By increasing the number of providers who can work effectively work with adult autistic clients, we can hopefully minimize delays in service delivery and increase availability of high-quality services.

Mindshift in autism: a call to professionals in research, clinical, and educational settings.

Autistic people often have poor outcomes over the life course, including in health, education, employment, and community inclusion. Many professionals working with Autistic adults in research, clinical, and educational settings devote their careers to trying to improve such outcomes. However, we maintain that real progress cannot happen without a fundamental mindshift. The status quo for professionals is to view autism as an illness. Instead, the neurodiversity movement encourages us to value and embrace autism as an aspect of human diversity and asks us to view Autistic people as a marginalized group that experiences significant disparities. While some professionals may be adopting language and concepts from the neurodiversity movement, we argue that making this mindshift fundamentally changes our practice across research, clinical, and educational settings. In this perspective, we call on professionals to embrace this mindshift to reduce discrimination and stigma, halt the spread of harmful ideologies, and help Autistic adults live fulfilling lives.

Clinician factors related to the delivery of psychotherapy for autistic youth and youth with attention-deficit hyperactivity disorder.

LAY ABSTRACT: Autistic children and youth often experience mental health problems, such as anxiety, depression and behavioural challenges. Although there are therapy programmes that have been found helpful in reducing these issues, such as cognitive behaviour therapy, autistic children often struggle to receive adequate mental health care. Clinicians' knowledge, attitudes, confidence and beliefs about treating mental health problems in autistic people may be related to their choices in providing psychotherapy. Across Ontario, Canada, 611 mental health clinicians, working in publicly funded agencies, completed an online survey about their experiences and opinions on delivering therapy for autistic clients compared to those with attention-deficit hyperactivity disorder. Clinician knowledge was associated with their intention to treat autistic clients or clients with attention-deficit hyperactivity disorder, partly because of their attitudes and the social pressures or values they felt. Clinicians reported feeling less intent on providing therapy to autistic youth compared to youth with attention-deficit hyperactivity disorder because of differences in their attitudes, social pressures and knowledge. This research can inform the training and educational initiatives for mental health practitioners.

Clinician Knowledge, Confidence, and Treatment Practices in Their Provision of Psychotherapy to Autistic Youth and Youth with ADHD.

Autistic youth have an increased risk of mental health problems. Despite the efficacy of various psychotherapeutic approaches for autistic youth, they often do not receive these interventions. Research is needed to identify patterns of effective treatment for autistic youth and whether they differ from those used for youth with other neurodevelopmental conditions (e.g., attention-deficit hyperactivity disorder; ADHD). We compared clinicians' (N = 557) knowledge, confidence and practices when treating autistic youth and youth with ADHD. Although ratings were moderately high overall and similar interventions were used for both groups, clinicians were significantly less knowledgeable and confident when supporting autistic clients compared to clients with ADHD. Thus, improving clinician perspectives may help facilitate treatment for autistic youth with mental health problems.

Metrics to evaluate implementation scientists in the USA: what matters most?

BACKGROUND: Implementation science has grown rapidly as a discipline over the past two decades. An examination of how publication patterns and other scholarly activities of implementation scientists are weighted in the tenure and promotion process is needed given the unique and applied focus of the field. METHODS: We surveyed implementation scientists (mostly from the USA) to understand their perspectives on the following matters: (1) factors weighted in tenure and promotion for implementation scientists, (2) how important these factors are for success as an implementation scientist, (3) how impact is defined for implementation scientists, (4) top journals in implementation science, and (5) how these journals are perceived with regard to their prestige. We calculated univariate descriptive statistics for all quantitative data, and we used Wilcoxon signed-rank tests to compare the participants' ratings of various factors. We analyzed open-ended qualitative responses using content analysis. RESULTS: One hundred thirty-two implementation scientists completed the survey (response rate = 28.9%). Four factors were rated as more important for tenure and promotion decisions: number of publications, quality of publication outlets, success in obtaining external funding, and record of excellence in teaching. Six factors were rated as more important for overall success as an implementation scientist: presentations at professional meetings, involvement in professional service, impact of the implementation scientist's scholarship on the local community and/or state, impact of the implementation scientist's scholarship on the research community, the number and quality of the implementation scientist's community partnerships, and the implementation scientist's ability to disseminate their work to non-research audiences. Participants most frequently defined and described impact as changing practice and/or policy. This expert cohort identified Implementation Science as the top journal in the field. CONCLUSIONS: Overall, there was a significant mismatch between the factors experts identified as being important to academic success (e.g., tenure and promotion) and the factors needed to be a successful implementation scientist. Findings have important implications for capacity building, although they are largely reflective of the promotion and tenure process in the USA.

A pilot study of dialectical behaviour therapy skills training for autistic adults.

BACKGROUND: Autism spectrum disorder (ASD) is a common and lifelong neurodevelopmental disorder with the hallmark features of social impairment and restricted and repetitive patterns of behaviour. Individuals with ASD often experience co-occurring mental health difficulties, some of which may obfuscate the ASD features themselves. Although there is a high need for mental health services for autistic adults, there are surprisingly few evidence-based treatments (EBTs) available; moreover, many mental health practitioners who are well-trained in EBTs shy away from treating autistic individuals due to lack of training in ASD. AIMS: The aim of the current study was to evaluate the feasibility and acceptability of dialectical behaviour therapy skills training (DBT-ST) in a sample of autistic adults without intellectual disability. METHOD: Sixteen adults with ASD were recruited from a treatment waiting list to enrol in this study, which included 24 weeks of DBT-ST delivered in a group setting. Feasibility and acceptability were assessed using retention and attendance data and a participant satisfaction questionnaire. RESULTS: Retention (81.3%) and attendance data (mean 87.5%) provided support for the feasibility of this intervention. Overall satisfaction ratings were high (mean 4.5 out of 5), and participants reported that they felt that DBT-ST would probably be helpful for others with ASD (mean 4.5 out of 5). CONCLUSIONS: The study findings provide preliminary evidence of (1) the feasibility of providing DBT-ST for autistic adults in community-based clinics, and (2) the perceived benefit of DBT-ST for this under-served population. Recommended modifications to the standard DBT-ST materials are discussed.

Mental Health Services for Autistic Individuals Across the Lifespan: Recent Advances and Current Gaps.

PURPOSE OF REVIEW: This synthesis of recent mental health services research with autistic individuals presents significant advances, current gaps, and recommendations for improving mental healthcare for this population. RECENT FINDINGS: Recent advances include improved understanding of co-occurring mental health conditions among autistic individuals, a growing evidence base for interventions to address them, the development and implementation of new service models to support mental health for this population, and a substantial increase in mental health services and implementation research focused on autism. Ongoing challenges include a lack of mental health interventions designed for community implementation with autistic individuals, limited workforce capacity, complex and disconnected service systems, and racial, ethnic, and socioeconomic disparities in accessibility and quality of mental health services. Despite the advances in our understanding of mental health needs and mental health services for autistic individuals, several critical gaps remain. We encourage future efforts to develop and test interventions that can be used in community settings, train and incentivize the workforce to provide them, realign policies and funding with best practice, and embrace an equity-focused approach to autism research and care.

Profiles of Autonomic Activity in Autism Spectrum Disorder with and without Anxiety.

Both anxiety and autism spectrum disorder (ASD) are associated with atypical physiological activity. Few studies have systematically assessed the resting physiological activity in ASD with co-occurring anxiety disorders. We tested 75 participants divided in four groups: youth with ASD, with (ASD + Anxiety = 22, 6F, 12.29 ± 2.83 years old) and without co-occurring anxiety (ASD Alone = 15, 6F, 11.59 ± 2.85 years old) and compared their physiological profile with that of matched typically developing controls (TDC) with (Anxiety Alone = 16, 6F, 11.24 ± 3.36 years old) and without co-occurring anxiety disorders (TDC = 22, 8F, 11.88 ± 2.88 years old). Results indicated reduced sympathetic and parasympathetic activity at rest in ASD as compared to TDC youth. ASD + Anxiety and Anxiety Alone groups showed different sympathetic, but similar parasympathetic activity. These findings suggest that autonomic profile-based approaches may advance research, diagnosis, and treatment of ASD and anxiety.

Reliability and validity of the Pediatric Anxiety Rating Scale modified for autism spectrum disorder.

LAY ABSTRACT: Many youth with autism spectrum disorder have anxiety, but it can be difficult to assess anxiety with existing measures. We modified the Pediatric Anxiety Rating Scale for youth with autism spectrum disorder and tested the new measure in a group of 116 youth (age: 5-17 years) with autism spectrum disorder. The Pediatric Anxiety Rating Scale for youth with autism spectrum disorder is an interview that a clinician usually completes with the child and parent together. We modified the interview questions and scoring instructions based on feedback from parents of children with autism spectrum disorder and from a panel of experts in autism spectrum disorder and anxiety. Unlike many other anxiety measures, the Pediatric Anxiety Rating Scale for youth with autism spectrum disorder relies less on a child's verbal expression of anxiety and more on signs that a parent can easily observe. Training clinicians to administer and score the Pediatric Anxiety Rating Scale for youth with autism spectrum disorder was uncomplicated, and raters showed excellent agreement on video-recorded interviews. Youth who were not currently in treatment for anxiety had stable Pediatric Anxiety Rating Scale for youth with autism spectrum disorder scores with repeat measurement over a 1-month period. The Pediatric Anxiety Rating Scale for youth with autism spectrum disorder is a useful clinician-rated measure of anxiety in youth with autism spectrum disorder and fills a gap for assessing anxiety in this population.

Mental Health Clinicians' Screening and Intervention Practices to Reduce Suicide Risk in Autistic Adolescents and Adults.

Autistic individuals experience elevated risk for suicide ideation, attempts, and deaths. Little is known about how clinicians assess risk or intervene with suicidal autistic individuals. We surveyed 121 clinicians about use of suicide prevention practices with autistic and non-autistic clients. Clinicians reported greater self-efficacy in screening for suicide risk among non-autistic clients (p = 0.01). There were no statistically significant differences in whether they used standardized screening measures or in their reported normative pressure or attitudes towards screening. Clinicians reported similar rates of use of Safety Planning, an evidence-based suicide-prevention strategy, across groups, but greater acceptability for non-autistic clients (p < 0.001). These findings have implications for strategies to increase clinicians' adoption of these tools for autistic individuals.

A Lifespan Approach to Patient-Reported Outcomes and Quality of Life for People on the Autism Spectrum.

Autistic self-advocates, family members, and community organizations have called for greater emphasis on enhancing quality of life (QoL) for people with autism. Doing this is critical to understand how QoL unfolds across the life course and to clarify whether gender affects QoL, health, and functioning for people with autism. The purpose of this study was to curate and test a lifespan QoL measurement tool using freely available and well-constructed National Institutes of Health Parent-Reported Outcomes Measurement Information System (PROMIS). To develop the PROMIS Autism Battery-Lifespan (PAB-L), we identified PROMIS scales relevant for autism, reviewed each item, consulted with a panel of autism experts, and elicited feedback from autistic people and family members. This battery provides a comprehensive portrait of QoL for children ages 5-13 (through parent proxy), teens 14-17 (parent proxy and self-report), and adults 18-65 (self-report) with autism compared to the general population. Participants and parent informants (N = 912) recruited through a children's hospital and nationwide U.S. autism research registry completed the PAB-L online. Results indicate that compared to general population norms, people with autism of all ages (or their proxies) reported less desirable outcomes and lower QoL across all domains. Women and girls experienced greater challenges in some areas compared to men and boys with autism. The PAB-L appears to be a feasible and acceptable method for assessing patient-reported outcomes and QoL for autistic people across the life course. Autism Res 2020, 13: 970-987. © 2020 International Society for Autism Research, Wiley Periodicals, Inc. LAY SUMMARY: We developed a survey to measure the quality of life of children, teens, and adults with autism using free National Institutes of Health PROMIS questionnaires. People with autism and family members rated the PROMIS Autism Battery-Lifespan as useful and important. Some reported a good quality of life, while many reported that their lives were not going as well as they wanted. Women and girls reported more challenges in some areas of life than men and boys.

Self-Regulation is Bi-Directionally Associated with Cognitive Development in Children with Autism.

Children with autism are at high risk for self-regulation difficulties because of language delays and emotion-regulation difficulties. In typically-developing children, language development helps promote self-regulation, and in turn, cognitive development. Little research has examined the association between self-regulation and cognitive-skill development in children with autism. Children with autism (5-8 years), who were minimally-verbal (n=38) or typically-verbal (n=46) participated in a structured cognitive assessment and were observed for self-regulation difficulties during the cognitive assessment at the beginning and end of an academic year. Results showed that children with autism who were minimally- compared to typically-verbal had more self-regulation difficulties. Increase in self-regulation difficulties predicted less cognitive-skill gains, regardless of verbal ability, and cognitive skill gains also predicted changes in self-regulation difficulties. Interventions targeting self-regulation may be appropriate for all children with autism and should be adapted for minimally-verbal children.

Concordance between a U.S. Educational Autism Classification and the Autism Diagnostic Observation Schedule.

States in the United States differ in how they determine special education eligibility for autism services. Few states include an autism-specific diagnostic tool in their evaluation. In research, the Autism Diagnostic Observation Schedule (ADOS for first edition, ADOS-2 for second edition) is considered the gold-standard autism assessment. The purpose of this study was to estimate the proportion of children with an educational classification of autism who exceed the ADOS/ADOS-2 threshold for autism spectrum (concordance rate). Data were drawn from 4 school-based studies across 2 sites (Philadelphia, Pennsylvania, and San Diego, California). Participants comprised 627 children (2-12 years of age; 83% male) with an autism educational classification. Analyses included (a) calculating the concordance rate between educational and ADOS/ADOS-2 classifications and (b) estimating the associations between concordance and child's cognitive ability, study site, and ADOS/ADOS-2 administration year using logistic regression. More San Diego participants (97.5%, all assessed with the ADOS-2) met ADOS/ADOS-2 classification than did Philadelphia participants assessed with the ADOS-2 (92.2%) or ADOS (82.9%). Children assessed more recently were assessed with the ADOS-2; this group was more likely to meet ADOS/ADOS-2 classification than the group assessed longer ago with the ADOS. Children with higher IQ were less likely to meet ADOS/ADOS-2 classification. Most children with an educational classification of autism meet ADOS/ADOS-2 criteria, but results differ by site and by ADOS version and/or recency of assessment. Educational classification may be a reasonable but imperfect measure to include children in community-based trials.

"I wouldn't know where to start": Perspectives from clinicians, agency leaders, and autistic adults on improving community mental health services for autistic adults.

LAY ABSTRACT: Most autistic adults struggle with mental health problems, such as anxiety and depression. However, they often have trouble finding effective mental health treatment in their community. The goal of this study was to identify ways to improve community mental health services for autistic adults. We interviewed 22 autistic adults with mental healthcare experience, 44 community mental health clinicians (outpatient therapists, case managers, and intake coordinators), and 11 community mental health agency leaders in the United States. Our participants identified a variety of barriers to providing quality mental healthcare to autistic adults. Across all three groups, most of the reported barriers involved clinicians' limited knowledge, lack of experience, poor competence, and low confidence working with autistic adults. All three groups also discussed the disconnect between the community mental health and developmental disabilities systems and the need to improve communication between these two systems. Further efforts are needed to train clinicians and provide follow-up consultation to work more effectively with autistic adults. A common suggestion from all three groups was to include autistic adults in creating and delivering the clinician training. The autistic participants provided concrete recommendations for clinicians, such as consider sensory issues, slow the pace, incorporate special interests, use direct language, and set clear expectations. Our findings also highlight a need for community education about co-occurring psychiatric conditions with autism and available treatments, in order to increase awareness about treatment options.

Community Mental Health Services for Autistic Adults: Good News and Bad News.

Many autistic adults experience psychiatric conditions such as anxiety and depression. However, autistic adults often do not receive effective and affordable mental health (MH) treatment. Untreated psychiatric conditions in autistic adults are associated with a host of negative outcomes, including adaptive functioning impairments, difficulties with employment and independent living, and poor quality of life. The purpose of this Perspectives piece is to shed light on the current state of community MH services in the United States for autistic adults with co-occurring psychiatric conditions. Drawing on the available research and clinical experiences, we aim to (1) highlight positive developments in community mental healthcare for autistic adults; (2) summarize the barriers that continue to exist for autistic adults in need of MH services; and (3) provide recommendations for autistic adults and their families, community MH clinicians, and MH systems administrators to consider. Significant work is needed to provide autistic adults with affordable quality MH services. This Perspectives piece presents a summary of the needed changes and specific methods to continue to improve community MH services for autistic adults.

Factors Influencing the Use of Cognitive-Behavioral Therapy with Autistic Adults: A Survey of Community Mental Health Clinicians.

Cognitive-behavioral therapy (CBT) can improve anxiety and depression in autistic adults, but few autistic adults receive this treatment. We examined factors that may influence clinicians' use of CBT with autistic adults. One hundred clinicians completed an online survey. Clinicians reported stronger intentions (p = .001), more favorable attitudes (p < .001), greater normative pressure (p < .001), and higher self-efficacy (p < .001) to start CBT with non-autistic adults than with autistic adults. The only significant predictor of intentions to begin CBT with clients with anxiety or depression was clinicians' attitudes (p < .001), with more favorable attitudes predicting stronger intentions. These findings are valuable for designing effective, tailored implementation strategies to increase clinicians' adoption of CBT for autistic adults.

Do Student Characteristics Affect Teachers' Decisions to Use 1:1 Instruction?

One-to-one instruction is a critical component of evidence-based instruction for students with autism spectrum disorder, but is not used as often as recommended. Student characteristics may affect teachers' decisions to select a treatment and/or implement it. This study examined the associations between students' clinical and demographic characteristics and teachers' reported use of discrete trial training (DTT) and pivotal response training (PRT). Children's higher sensory symptoms, lower social approach, lower verbal skills and higher self-regulation difficulties were associated with more frequent 1:1 DTT and PRT. Results suggest that teachers give more frequent 1:1 instruction to children with more observable impairments, do not match children to type of 1:1 intervention, and may inadvertently neglect other students for whom individualized intervention may still be beneficial.

Adaptation to different communicative contexts: an eye tracking study of autistic adults.

BACKGROUND: Learning through social observation (i.e., watching other people interact) lays the foundation for later social skills and social cognition. However, social situations are often complex, and humans are only capable of attending to one aspect of a scene at a time. How do people choose where to allocate their visual resources when viewing complex social scenarios? For typically developing (TD) individuals, faces are often given priority. Depending upon context, however, it may be more useful to attend to other aspects of the environment, such as hands, tools, or background objects. Previous studies reported reduced face looking in individuals with autism spectrum disorder (ASD), but modulation of visual attention in response to contextual differences (e.g., according to social richness, or the presence/absence of communicative behaviors between two people) has only briefly been explored. In this study, we used eye-tracking technology to test the extent to which ASD adults and TD adults use social context to guide their gaze behavior. METHODS: Fifty-five adults participated (28 with ASD). The location and duration of participants' gaze were recorded while they watched a series of naturalistic social videos. Half of the videos depicted two people engaging in non-verbal communication (rich social scenes) while playing with toys. The other half depicted two people playing with toys separately, not interacting with each other (lean social scenes). RESULTS: ASD and TD adults both increased their attention to faces in communicative contexts (rich social scenes) as compared to non-communicative contexts (lean social scenes). However, TD adults increased their attention to faces significantly more when watching two people communicate than did ASD adults, who increased their attention to a lesser degree. Further analysis revealed that ASD adults persisted in looking at hands and toys, even when observing two people communicate in a rich social scene. CONCLUSIONS: Diminished gaze to faces when observing two people communicating may lead to fewer opportunities for social learning and subsequent reductions in social knowledge. Naturalistic measures of contextual modulation could help identify areas of need for individuals learning about the social world and could become treatment targets to improve everyday social learning.

Community-academic partnerships in implementation research.

Community-academic partnerships(CAPs) are a critical component of implementing and sustaining evidence-based practices (EBPs) in community settings; however, the approaches used and mechanisms of change within CAPs have not been rigorously studied. The first step to advancing the science of CAP is to operationally define and contextualize the approaches used in CAP as part of the implementation process. Our research group has gleaned valuable lessons about the best ways to develop, support, and nurture community partnerships within the context of implementation. In this article, we share these lessons learned and relate them to implementation strategies that are most relevant to community-partnered implementation endeavors. The implementation strategies most relevant to CAPs are as follows: (a) building a coalition, (b) conducting local consensus discussions, (c) identifying barriers and facilitators to implementation, (d) facilitating interactive problem solving, (e) using an advisory board or workgroup, (f) tailoring strategies, (g) promoting adaptability, and (h) auditing and providing feedback. We offer suggestions for future research to systematically evaluate these strategies, with an eye toward advancing the science of CAP and implementation science and the goal of guiding future research and improving the implementation of EBPs in community settings.

Treatment Utilization by Adults with Autism and Co-Occurring Anxiety or Depression.

BACKGROUND: While a growing body of research suggests that talk therapies can reduce anxiety and depression in adults with autism spectrum disorder (ASD), we know little about what community treatment for these disorders looks like for them. The present study investigated whether treatment utilization differs between adults with and without ASD who have anxiety or depression. METHOD: Using Pennsylvania Medicaid claims data, adults aged 18-65 years diagnosed with ASD and depression or anxiety (n = 268) were matched 1:4 to adults with depression or anxiety disorder without ASD (n = 1,072). Chi-square tests and generalized linear models were used to estimate differences in diagnoses and psychiatric treatment between groups. RESULTS: While the proportion of people prescribed benzodiazepine and antidepressants did not differ between groups, the ASD group had more days per month prescribed for all medications. Adults with ASD also were more likely to be prescribed multiple medications concurrently and to use case management. Adults without ASD were more likely to receive talk therapy for anxiety/depression. Among those receiving talk therapy, adults with ASD averaged more individual visits per month. CONCLUSIONS: Findings suggest that therapists may need more session time for adults with ASD, although it is unclear if this time is dedicated to anxiety or depression treatment. The greater use of psychotropic medications among adults with ASD may suggest unresponsiveness to the talk therapy they receive or greater clinical complexity.