Damian Sendler, M.D. – Among the most recent developments are a better understanding of autistic people’s co-occurring mental health conditions, a growing evidence base for interventions to address these conditions, the development and implementation of new models of mental health services to support this population, and a substantial increase in mental health services and implementation research focused on autism. There is a lack of community-based mental health interventions for autistic people, as well as a shortage of qualified workers, a jumbled and disjointed system of mental health services, and disparities based on race, ethnicity, and socioeconomic status in access and quality.
Damian Jacob Sendler: Autism spectrum disorder (ASD) is a constellation of social communication difficulties and restricted, repetitive patterns of behaviors or interests that have strong genetic underpinnings and appear early in life. The prevalence of autism spectrum disorders (ASDs) in children and adolescents is on the rise, with the current US youth estimate standing at 1 in 54 [2]. There has been a lot of debate among autism researchers, practitioners, and self-advocates about whether to use identify-first or person-first language [3–4]. The autistic community’s rights and preferences were taken into consideration when drafting this review, which is why we opted to use identity-first language (e.g., “autistic person”).
Dr. Sendler: Across the lifespan, many autistic individuals have co-occurring mental health issues that necessitate transdisciplinary care. People with autism are more likely to suffer from disorders such as attention deficit hyperactivity disorder (ADHD), anxiety, sleep disorders, disruptive behavior and depression [11]. [11] Prevalence in clinically referred samples is significantly higher than in population-based or registry studies. A person’s quality of life can be harmed even more by co-occurring mental health conditions than by their core autistic characteristics [12]. Mental health issues persist and often worsen in adults, despite the fact that most studies to date have focused on autistic children [13–17].
It is important to examine and address co-occurring mental health conditions as well as the mental health service needs of autistic individuals, evidence-based mental health treatments, and capacity building for autistic individuals’ mental health services. [18, 19]. For autistic people of all ages, this review summarizes recent advances and ongoing gaps in quality mental health care. Because Medicaid-reimbursed healthcare and public education services are the primary sources of funding for autism care in the United States, we focus on findings from research conducted in these systems.
Mental health services include a wide range of treatments (including both medication and non-medication approaches) and resources (which address challenges to mental health, but may not be directly therapeutic). People who are in need of mental health services include those who have been diagnosed with a mental illness and those who need treatment for a variety of mental health issues. Psychologists, social workers, psychiatrists, primary care physicians, and other allied health professionals provide mental health services. Mental health services for autistic people can be provided in a variety of settings depending on funding, the severity of the client’s mental health needs, and other factors.
The prevalence of co-occurring mental health conditions, including trauma and gender dysphoria, has increased in autistic individuals, despite previous studies showing a high prevalence of these conditions [11]. For autistic individuals, there is growing attention to the fact that they have higher rates of suicidal thoughts and behaviors compared to the general population [20], with co-occurring mental health conditions documented as a risk factor for suicide attempts and deaths.
More attention is being paid to the mental health needs of autistic adults and females with autism, two groups that have been historically understudied and underserved as we learn more about the wide range of co-occurring mental health conditions. Adult autistics face a higher than average risk of mental health issues, with more than half meeting criteria for a co-occurring mental illness [14]. Primary co-occurring mental health concerns change over the course of development, making a lifespan approach essential. Depression and suicidal thoughts are more common in adolescents than in children [15, 22]. Autistic women, according to newly emerging research on gender differences, have higher rates of internalizing disorders [23] and experience particularly elevated rates of suicidal thoughts and behaviors [21, 24]. Autistic adults and autistic females face significant barriers in accessing quality mental health services, despite the prevalence of co-occurring mental health conditions and the resulting impairment they experience as a result.
Co-occurring mental health conditions in ASD have been the focus of intensive research to date [28, 29, 30]. [31••] For youth, this work has taken two approaches: (1) developing interventions specifically tailored to the needs of autistic individuals and (2) adapting existing evidence-based interventions (EBIs) for use with autistic youth. For example, tailoring or adding EBI elements to fit the unique characteristics and needs of the autistic individual (e.g., increasing parent involvement, adding visual supports, incorporating focused interests and using more concrete language) is the most common EBI adaptation. In order to improve the fit of the intervention, increase engagement, and promote the generalization of skills at home, these modifications are essential For autistic children who also suffer from anxiety, an EBI (cognitive behavioral therapy) tailored to their specific needs has been shown to have greater efficacy than either a standard EBI or treatment as usual [32].
Families of autistic children often need assistance in accessing and participating in mental health services. In order to increase access to diagnostic and intervention services, family navigation is an evidence-based case management practice that combines motivational interviewing, service navigation, and collaborative problem solving. [33, 34] ASD and co-occurring mental health needs are adapting family navigation [33, 34]. Co-occurring mental health needs have been identified, managed, or linked to mental healthcare in primary care settings by other service delivery models. People who are most at risk of health disparities can be reached easily by primary care. For autistic individuals, primary care may be less stigmatizing and more comprehensive than collaborative care models [35]. ECHO’s autism program [36, 37] and the Access to Tailored Autism Integrated Care model [38, 39] are two recent examples that are accumulating evidence of their feasibility, acceptability, and adoption.
Damian Sendler
Another recent development is the increasing use of implementation science methods, models, and measures in community mental health services to reduce the gap between research and practice. Transdisciplinary implementation science has emerged as a means of accelerating the uptake of evidence-based policies, practices and programs into routine healthcare systems. A similar gap in quality and access has been addressed in autism [40,41]. Thus, the field has begun to move beyond a “train and hope” model of translating EBIs into local practice. Adoption and maintenance of EBIs in service contexts require a focus on both the characteristics of EBIs and the use of systematic strategies to implement EBIs. An important part of this project involves the involvement of community partners and stakeholders. EBIs are made more feasible and acceptable in community settings through close collaboration with relevant community stakeholders, and they address community-identified needs or implementation gaps for organizations, providers, and autistic individuals. This is important. Both providers and organizations have made notable progress toward implementing EBIs with autistic children in community-based children’s mental health settings [42, 43••]. In addition, these efforts have used hybrid effectiveness-implementation designs that simultaneously focus on the clinical EBI and key implementation factors, processes, or strategies [45]. Using a combination of efficiency and implementation trial designs, we can both speed and improve the translation of research into routine practice and improve the quality of mental health services provided to autistic people. When applied to research translation, the use of implementation science frameworks and methods represents a significant step forward in ensuring that the significant efforts made to develop and adapt EBIs thus far have a beneficial effect on public health.
Damian Jacob Markiewicz Sendler: There are still many critical gaps in our understanding of autistic people’s mental health needs and mental health services. Few autistic people receive EBIs as part of their mental health treatment [46]. [46] People in the community may not use these practices because of a variety of reasons. There has been little focus on older and/or transition-age youth in the testing of most mental health interventions for autistic children and adolescents, according to a recent review [47]. To meet the mental health needs of autistic individuals, who typically have multiple co-occurring conditions, this narrow focus restricts our ability. The review also found that there was a lack of representation of community mental health service providers who are typical of the clinical workforce. There was a significant overrepresentation of white youth in the efficacy trials of cognitive behavioral therapy for autistic children, as well as a significant underrepresentation of Black and Latino youth and families from low socioeconomic status backgrounds [48]. Findings like these point to an important hole in our understanding of how these interventions work as treatments and whether or not they are appropriate for the wide variety of people who are treated for mental health issues within communities.
Most EBIs for mental health were developed and tested in academic or medical research settings with extensive expertise and resources [31••], as opposed to being developed for community implementation by providers with limited autism training and resources. As a result, these interventions are less likely to be adopted in community settings. As an example, an EBI may not have been designed to fit most community service delivery models because of its structure (e.g., length of treatment sessions) or delivery format (e.g., group-based).
The lack of mental health clinicians trained to work with autistic individuals is another major barrier to quality mental health services [25•, 49•, 50, 51, 52••, 53]. Due to their limited training and experience, mental health clinicians who regularly treat psychiatric conditions like anxiety and depression lack the confidence to treat these same conditions in autistic clients [25•, 50, 53]. Mental health clinicians who specialize in autism can be difficult to find, as they tend to be based in university or urban areas, where they are more difficult to access. Because ASD has traditionally been seen as primarily affecting children, providers who specialize in working with adults are more likely to lack autism-specific training [53].
Damian Jacob Sendler
As autistic people transition from youth-serving systems to adult-serving systems, there are difficulties in determining eligibility, accessing care, and aligning this with funding appropriateness [55]. For autistic individuals, these complexities are exacerbated because they may be eligible for additional autism-specific services that are typically funded differently than both general healthcare and mental healthcare. Such services as applied behavioral analysis (ABA) are frequently coordinated and funded by state systems for developmental disabilities. Applied behavior analysis and mental health services can be confusing to providers, caregivers, and autistic people alike, especially when it comes to determining which is more appropriate for an individual. Service reimbursement policies that distinguish between eligibility for developmental disability and mental health services may explain some of this muddle [56, 57]. Families of children with autism who also have mental health issues face a similar challenge, as the educational and healthcare systems don’t always see eye-to-eye, making it difficult to connect care and raising questions about how mental health services should be funded and delivered in schools.[58, 59]
Last but not least, the problems highlighted in this section are made worse for people of color and those living in poverty [52••, 60–63]. For autistic children, racial and ethnic disparities in access and quality of services have been found in a recent systematic review. Specifically, families of color and lower income reported reduced service access and quality and greater unmet service needs than white, higher-resourced families. In a study of Medicaid-enrolled autistic children, Black, Asian, and Native American/Pacific Islander children received fewer outpatient services relative to white children [65••]. In addition, a large statewide survey of autistic adults and their caregivers on a waiting list for home- and community-based Medicaid services found that Black autistic adults had significantly greater unmet needs for mental health services, relative to white autistic adults [66••]. These documented disparities for autistic individuals are not exclusive to mental health services (e.g., allied health services [67], healthcare transition services [68]). (e.g., allied health services [67], healthcare transition services [68]). In order to improve equity in the provision of evidence-based mental healthcare for autistic people, more research is required to identify and test structural changes.
Damien Sendler: We need a different approach to developing and testing mental health interventions (e.g., “designing for dissemination” [69, 70]) to address the issue that EBIs were not designed for community implementation. Using implementation science methods early in the research-to-practice translation pipeline can help ensure the uptake and sustainability of EBIs in community care [56, 71]. A crucial part of this procedure is the involvement of stakeholders from the community and academia [72]. Autistic people’s and their caregivers’ voices must be heard if services are to be made more accessible and of higher quality, according to new research [73,74]. There are numerous barriers preventing minority families from participating in research, which must be overcome in order for intervention research to be successful (e.g., distrust of the research process [75]). For autistic individuals, more research is required on cultural adaptations to EBIs. To ensure that the mental health intervention evidence base is applicable to autistic individuals and families from diverse and minoritized backgrounds, these collective efforts are essential.”
Second, we need more mental health clinicians and other professionals who are willing and able to work effectively with autistic people to address the limited capacity of the workforce. [25•] We recommend incorporating autism-focused curricula and training opportunities for healthcare professionals across the spectrum of specialties and mental health disciplines, from pre-service to post-service education. Co-occurring psychiatric conditions in autistic people, as well as the assessment and management of suicide risk, should be included in training [78]. Providers’ willingness and capacity to accept autistic people as clients or patients must be addressed through systemic/policy and organizational strategies as well (e.g., broadening or clarifying service eligibility to include autism in both youth and adult service systems, increasing dissemination of mental health EBIs for autistic individuals [79]). Autism is only one facet of the problem of a shrinking pool of qualified workers, and addressing it will likely necessitate major adjustments to preservice education, continuing education, supervision and reimbursement models.
Third, we need to integrate autism mental healthcare into existing systems and improve communication between systems in order to address the disconnected service systems. To address the current disjointed organization of public services, this process will involve developing and testing new policy and fiscal innovations [56]. Because autism care necessitates a multi-system approach, effective communication between systems is essential [80]. National Association for Dual Diagnosis [81] provides useful tools and resources for improving interagency collaboration, particularly between the mental health and developmental disabilities systems.
While acknowledging the impact of racism on autism research and clinical practice is important, we must also continue to focus on the needs of autistic people. It is possible to implement meaningful changes in policy, research, clinical practice and implementation science through the use of a number of recent articles [82–86]. Both race and place must be taken into consideration when promoting equity in autism research, service access, and care quality. For example, the underrepresentation of Black researchers and clinicians in the autism field must be taken into consideration. It is possible to promote systemic change and reduce inequities in mental health services by looking at autism research and clinical practice through a social justice lens.
It’s encouraging to see recent progress in autistic people’s mental health services and implementation research. It’s important to note that there are still significant gaps in access and quality in mental health services for autistic individuals, particularly those from low-income families and racial/ethnic minorities. Organizational and financial aspects of mental health services must be given special attention in order to implement this change. An overview of recent research and recommendations for addressing key issues is provided in this review, with a primary focus on publicly funded mental health services in the United States of America. Other service types and international efforts, particularly in low- and middle-income countries, could be the focus of future work. Co-occuring psychiatric conditions in autistic individuals have made significant progress, but we still need to work on developing community-based interventions that can be used, training and rewarding the workforce to provide them, and modifying policies to align with best practice. Autism research must take a systems- and equity-oriented approach if it is to close these gaps.