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. Author manuscript; available in PMC: 2025 Sep 1.
Published in final edited form as: Res Autism Spectr Disord. 2024 Jul 6;117:102450. doi: 10.1016/j.rasd.2024.102450

“Education would be step number one”: Community mental health clinicians’ training and support needs to treat anxiety in autistic youth

Shannon C LaPoint 1, Grace Lee Simmons 2, Julia Heinly 3, Daylin Delgado 4, Whitney S Shepherd 5, Lauren Brookman-Frazee 6,7, Eric A Storch 8, Brenna B Maddox 9,10
PMCID: PMC11529797  NIHMSID: NIHMS2009404  PMID: 39493499

Abstract

Background:

Autistic youth experience high rates of anxiety, which has been treated with modified cognitive-behavioral therapy (CBT), often integrating exposure therapy. Such anxiety treatments are effective for this population; however, there remains a gap between these evidence-based mental health interventions and their implementation in community mental health (CMH) services where autistic youth receive care.

Method:

This qualitative study conducted semi-structured interviews with four types of community members in the United States: 15 autistic youth with anxiety, 15 caregivers of autistic youth with anxiety, 11 CMH clinicians, and 8 CMH clinic leaders. Participants identified the training needs of CMH clinicians to support the delivery of CBT for autistic youth with anxiety.

Results:

Through inductive thematic analysis, three themes were found: presentation of autism and anxiety, intervention delivery, and training format. Participants highlighted the need for clinician education to understand the varying presentations of autism and co-occurring anxiety and how to effectively deliver a personalized mental health intervention for autistic youth. Clinicians also desired a clinician training program that includes engaging components and offers individualized, ongoing support while the intervention is delivered.

Conclusions:

Findings from this study will inform the development of a clinician training program to deliver CBT modified for autistic youth with anxiety in CMH contexts.

Keywords: mental health, community, training, autism, anxiety

Recent estimates suggest 1 in 36 children in the United States meets diagnostic criteria for autism (Maenner et al., 2023). Among autistic individuals, as many as 40% may exhibit clinically significant anxiety (Lecavalier et al., 2019). Diagnostically, anxiety symptoms and behaviors associated with autism may present similarly (e.g., avoidance of social situations; Kerns & Kendall, 2012), accounting in part for these elevated prevalence rates. Nonetheless, in autistic youth the presence of concurrent, clinically impairing anxiety is associated with elevated symptoms of depression and self-injurious behaviors (Kerns et al., 2015), increased irritability (Mayes et al., 2011), loneliness (White & Roberson-Nay, 2009), susceptibility to peer victimization (Hunsche et al., 2022), and broad social challenges (McVey et al., 2018).

Cognitive behavioral therapy (CBT) is a promising treatment approach that teaches people to monitor cognitive activity, which subsequently alters an individual’s mood and behavior. Prior work has demonstrated efficacy of modified CBT integrating exposure specifically for autistic individuals with anxiety (Reaven et al., 2012; Ung et al., 2015; Wood, Ehrenreich-May, et al., 2015; Wood et al., 2020). However, these past studies have been largely limited to tightly controlled efficacy trials conducted in academic or medical research settings with extensive expertise and resources, versus community-based effectiveness-implementation trials with delivery by community clinicians with limited autism training and supports (Dickson et al., 2021). Relatedly, some of these intervention models are not designed with the traditional delivery models of community mental health (CMH) services in mind (i.e., 50-minute, individual therapy, billable sessions). These factors contribute to unmet service needs for autistic youth with anxiety, especially for youth living in rural communities (Antezana et al., 2017), and from disadvantaged socioeconomic (Nguyen et al., 2016), and culturally diverse backgrounds (Liptak et al., 2008; Magaña et al., 2013) who are often unable to access university-affiliated or private practice clinics. Further underscoring the scope of unmet service needs, a recent survey found that only 50.3% of 6,500 outpatient CMH treatment facilities across the contiguous United States were providing services to autistic youth. Rural and lower socioeconomic status counties were less likely to offer an outpatient clinic with accessible services for autistic children and their families (Cantor et al., 2022). In response, researchers have called for increased focus on implementation of evidence-based practices (EBPs) in CMH services that are accessible to autistic youth and their families (Keefer et al., 2018).

While research suggests that CMH service providers use EBPs, these approaches often are not tailored for autistic individuals, nor delivered with the necessary intensity and thoroughness expected to prompt meaningful, clinical change (Brookman-Frazee et al., 2010). Currently, there is limited specialized training in working with autistic individuals afforded to CMH clinicians (Brookman-Frazee et al., 2012b; Lipinski et al., 2022). A recent systematic review by Corden and colleagues (2022) highlighted the consequences of insufficient clinical training amongst these providers, who self-reported low to moderate levels of knowledge about autism, low to moderate ratings of self-efficacy in working with autistic individuals, and lower ratings of comfort in working with autistic clients compared to non-autistic clients. Despite evidence that CMH clinicians often lack knowledge, experience, and confidence related to working with autistic clients, little is known regarding how to best translate effective mental health interventions for autistic youth to CMH services in the United States.

Prior work has taken a qualitative or mixed methods approach to address the research-to-practice gap in implementation of evidence-based practices for autistic individuals with co-occurring mental health concerns (e.g., Camm-Crosbie et al., 2019; Crane et al., 2019; Robertson et al., 2018; Trembath et al., 2012; Maddox et al., 2020) and their caregivers (e.g., Brookman Frazee et al., 2012a). When considering the landscape of mental healthcare for autistic individuals, autistic adults have consistently reported broad difficulties in accessing CMH services. When they finally receive mental health services, autistic individuals often report pervasive negative experiences with professionals who demonstrate limited knowledge of autism and are unable to appropriately tailor therapeutic services for their autistic clients (e.g., Camm-Crosbie et al., 2019; Crane et al., 2019; Maddox et al., 2020). Autistic adults also report frustration with pressure they feel from providers facing a lengthy waitlist who, perhaps unintentionally, subsequently communicate to their autistic patients the importance of moving as quickly as possible towards ending therapy (Crane et al., 2019). Parents of autistic children have similarly noted difficulty accessing appropriate mental health services for their children and reported concern about lack of provider knowledge of autism; those who reported that their child made progress towards therapeutic goals noted that their child’s therapist had specialized autism training (Brookman-Frazee et al., 2012a). Conducting needs assessments with key community members can inform valuable intervention adaptations (Chlebowski et al., 2020) and lead to improved quality of care for autistic youth (Brookman-Frazee et al, 2019; Brookman-Frazee et al., 2021; Reaven et al., 2020).

In addition to focusing on the perspectives of autistic individuals and their caregivers, research has also considered clinicians’ self-reported needs regarding implementation of evidence-based CMH services with autistic clients (e.g., Brookman-Frazee et al., 2012b; Maddox et al., 2020; Spain et al., 2022). Brookman-Frazee and colleagues (2012b) surveyed 100 CMH clinicians to capture their experiences providing care to autistic youth. Seventy-six percent of clinicians had served a child with autism, yet broadly these clinicians reported limited training in autism and inefficacy of typical psychotherapeutic strategies with this population. The present study builds on this work, as well as research with CMH clinicians and agency leaders regarding broader needs when providing clinical care to autistic adults. These community member groups consistently noted lack of knowledge and experience, limited skills, and low confidence in working with autistic adults (Maddox et al., 2020). The CMH clinician and agency leader participants also emphasized the importance of including autistic adults in the creation and delivery of clinical training programs (Maddox et al., 2020). Regarding CBT, specifically, Spain and colleagues (2022) conducted a Delphi survey in which iterative feedback was collected from practitioners across disciplines who worked with autistic children and adults. Group consensus of these findings identified several priorities when considering a training program for CBT practitioners, including autism-specific training, instruction in tailoring CBT practices to autistic individuals and enhancing engagement with autistic clients, and consideration of co-occurring conditions (Spain et al., 2022). Importantly, clinicians consistently report high motivation to participate in specialized training to better suit their autistic clients’ needs (e.g., Brookman-Frazee et al., 2012b; Spain et al., 2022). Prior work has integrated feedback from key community members (organizational leaders, clinicians, and parents of autistic children) in the development of a clinician training program focused on broad evidence-based strategies for working with autistic youth; clinicians who participated in this training reported increased knowledge of autism, and increased ability to tailor strategies to the needs of their autistic clients (Drahota et al., 2014). Moreover, autistic youth who received services from therapists who engaged in these tailored training programs show positive clinical outcomes, including significantly reduced externalizing behaviors (Brookman-Frazee et al., 2019; Brookman-Frazee et al., 2020). To our knowledge, no published studies have focused specifically on anxiety when interviewing autistic youth, their caregivers, CMH leaders and clinicians to identify training priorities for CMH clinicians working with autistic youth.

To address the lack of research in this area, we used a qualitative methodology to identify CMH clinicians’ training and support needs to deliver a tailored CBT program for autistic youth with anxiety (Community-based Anxiety Program Tailored for Autism; CAPTA). Although several research teams have previously conducted formal needs assessments with community members (Brookman-Frazee et al., 2019; Brookman-Frazee et al., 2021; Maddox et al., 2020; Reaven et al., 2020), this is one of the first studies of CBT to conduct a needs assessment with the intended end users (i.e., autistic youth) and other community members prior to testing intervention effectiveness (Lake et al., 2020). Information captured from these semi-structured interviews will shape the development of CAPTA and the associated training protocol for CMH clinicians with minimal autism training.

Methods

This manuscript aligns with guidelines put forth by the COnsolidated criteria for REporting Qualitative research (COREQ) checklist (Tong et al., 2007).

Participants

Study participants (n = 49) included individuals from four categories: autistic youth with co-occurring anxiety, parents of autistic youth with co-occurring anxiety, CMH clinicians, and CMH clinic leaders. Participants from each group were recruited through convenience sampling. Individuals were recruited via email from two academic universities in the Southern region of the United States, organizations that provide mental health services to youth, professional autism organizations, and a participant registry for autism research. Recruitment continued until sufficient information power was obtained (Braun & Clarke, 2022; Malterud et al., 2016).

Autistic youth.

Eligible youth were between the ages of 12 and 17 years old, had an autism diagnosis (per caregiver report), and experienced anxiety. Anxiety severity was measured with the Parent-Rated Anxiety Scale-ASD (PRAS-ASD), a 25-item scale designed specifically for autistic youth (Scahill et al., 2019). PRAS-ASD total scores range from 0–75, with higher scores indicating greater anxiety. Autism and anxiety diagnoses were not independently confirmed by the research team. Fifteen autistic youth ranging from 12 to 17 years old were included. PRAS-ASD scores ranged from 16–68 (M = 36.80, SD = 14.24). Two additional autistic youth participated in the interview, but were excluded from the analysis, as they did not meet inclusion criteria.

Parents.

Parents were eligible if they had a child: (1) between the ages of 7 and 17 years old, (2) with a diagnosis of autism, and (3) who experienced anxiety. Autism and anxiety diagnoses were not independently confirmed by the research team. Autistic youth and their parents were not required to participate as a pair. We included both members of the family if they expressed interest. Fifteen mothers between the ages of 34 and 55 with autistic children between the ages of 9 and 17 (M = 12.67, SD = 2.64), participated in the current study.

Clinicians.

Clinicians were eligible if they provided outpatient psychotherapy in a publicly funded clinic for youth (age 7–17) with anxiety. Eleven clinicians between the ages of 28 and 54 participated. Clinicians had between 2 and 25 years of experience practicing as a clinician, including pre-licensure training (M = 11.55, SD = 7.42), and between 0 and 22 years working with autistic individuals in a professional capacity (M = 8.63, SD = 7.08). About 91% of the clinicians were licensed at the time of the interview.

Clinic leaders.

Lastly, clinic leaders were eligible if they (1) were directors, program leaders, or other leaders who worked in a publicly funded clinic, and (2) provided administrative oversight of mental health clinicians who delivered outpatient psychotherapy services for youth (ages 7–17) with anxiety. Eight clinic leaders between the ages of 44 and 70 participated. Clinic leaders had been in their roles between 1 and 22 years (M = 7.88, SD = 6.71). Additional demographic information for each participant category is included in Table 1.

Table 1.

Participant Demographics

Parent Youth Clinicians Clinic Leaders
Variable n % n % n % n %
Gender
  Female 15 100.0 2 13.3 9 81.8 6 75.0
  Male – – 12 80.0 2 18.2 2 25.0
  Non-binary – – 1 6.7 – – – –
Race
  American Indian or Alaska – – – – – – – –
  Native – – 1 6.7 – – 1 12.5
  Asian 1 6.7 2 13.3 2 18.2 1 12.5
  Black/African American – – – – – – – –
  Hawaiian or Other Pacific 13 86.7 11 73.3 9 81.8 4 50.0
  Islander – – – – – – 2 25.0
  White 1 6.7 1 6.7 – – – –
  Not listed
  Prefer not to answer
Ethnicity
  Hispanic, Latino or Spanish origin 1 6.7 1 6.7 5 45.5 1 12.5
  Not Hispanic, Latino or Spanish origin 14 93.3 14 93.3 6 54.5 7 87.5
Highest level of education
  Some high school – – – – – –
  High school – – – – – –
  Some college 1 6.7 – – – –
  Vocational/associate – – – – – –
  degree 8 53.3 – – – –
  College (Bachelor’s degree) 6 40.0 11 100.0 8 100.0
– – – – – –
  Graduate/professional
  Other
Variable M SD M SD M SD M SD
Age 44.00 6.02 14.87 1.73 40.64 8.04 54.38 8.43
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Procedures

A research team member screened interested individuals. Participants who met inclusion criteria were scheduled for a 60-minute interview conducted over Zoom. The consent or assent form and interview guide were emailed in advance and autistic youth could choose to have their caregiver present throughout the interview. During the study visit, the research team member reviewed informed consent or assent forms with participants and answered study related questions. Participants then completed a demographic questionnaire, and parents completed the PRAS-ASD, using REDCap, a secure web platform (Harris et al., 2009).

Research team members shared the purpose of the study with participants and conducted semi-structured interviews, trained by the last author. The interview questions were guided by the Exploration, Preparation, Implementation, Sustainment (EPIS) framework, a conceptual model of factors associated with the successful adoption, implementation, and sustainment of evidence-based practices (Aarons et al., 2011; Moullin et al., 2019). Interview guides varied for each group. For example, autistic youth were asked to describe their experiences receiving treatment for anxiety and clinicians were asked to describe their experiences working with autistic youth with anxiety. All participants were asked to describe the ideal content and structure of a training program for CMH clinicians to better serve autistic youth with anxiety. Interview guides are included as supplemental material. All participants were compensated with a $20 gift card for their participation. The [masked for review] Institutional Review Board approved all procedures associated with this study (protocol number: [masked for review]).

Qualitative Analysis

Interviews were audio-recorded and transcribed verbatim by a research assistant. Transcripts were checked for accuracy by a second research assistant. Dedoose (SocioCultural Research Consultants, LLC, Los Angeles, CA, USA), a qualitative software, was used to code files. We followed Braun and Clarke’s six-phase framework for conducting an inductive thematic analysis (Braun & Clarke, 2006, 2022). These steps included reading each transcript thoroughly to become immersed in the data, generating initial codes to inform the development of a codebook that captured responses for all participant groups, identifying and defining themes, and producing a scholarly report. Given the lack of qualitative research available on training needs for CMH clinicians working with autistic youth with anxiety, we prioritized the voices of participants. Therefore, the themes presented were identified inductively and are strongly connected to participant interviews, rather than guided by theoretical frameworks (Braun & Clarke, 2006). Together, the coding team determined which themes were significant and would be reported in the manuscript based upon a subjective heuristic; themes needed to be conveyed by multiple participants and related to CMH clinicians’ training and support needs.

Positionality statement.

The lead author is a female, non-autistic postdoctoral research fellow who has expertise in the transition from high school to adulthood for autistic individuals and the experiences of autistic individuals in employment and higher education contexts. The other two members of the coding team (MASKED FOR REVIEW) are both female, non-autistic postbaccalaureate research assistants. Five non-autistic females with varying positions were involved in conducting interviews with community members. These five individuals were independent from the coding team. All coding and interview team members use a strengths-based approach and aim to prioritize the voices of autistic people in research.

Results

From participant interviews, coders identified three themes and seven subthemes about the training and support needs of CMH clinicians (Fig. 1). See Table 2 for additional quotes that correspond to the themes and subthemes.

Figure 1.

Figure 1.

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Themes and Subthemes from Participant Interviews

Table 2.

Themes, Subthemes, and Corresponding Quotations

Theme Subtheme Corresponding Quotation
Training content: The presentation of autism and anxiety Core characteristics of autism “I think a lot of people still have a pretty rigid, narrow definition of autism...You know there are many flavors and varieties of autism. It’s not one thing, right? But just a little background on: this is what autism is, here are the symptoms [and] they may manifest somewhat differently.” (3C)
Presentation of anxiety in autistic youth “I don’t have any anxiety patients that are alike. But understanding the patients that you’re [going to] be seeing and understanding the various types of anxiety that you may see from these kids.” (4C)
Training content: Intervention delivery Intervention overview “I think more specific like steps, like what would you do in each of those situations to, yeah, what kind of exposure therapy would you use for that.” (6C)
Considerations for intervention modification “...They may not look at you, and they may get frustrated easily, and you may have to go a lot slower to get them to understand the concept. Show them visual aids...you have to get a little creative with this population sometimes to reach them.” (3CL)
Team-based approach to intervention “So maybe you focus [the] training on how to involve and engage the school in helping to support that child through their services, through their treatment in the classroom, being able to give tips and strategies to the teachers, in identifying and recognizing, ‘hey, right now Johnny is having an episode, he’s really anxious about this.’” (4CL)
Training format Interactive approach to learning the material “I always like case examples, like vignettes and how treatment was approached and what worked and what didn’t. Even in Graduate School, you can talk till you’re blue in the face, but unless I can hear or see like what, what was, what was the presenting problem and what were steps that you took.” (7C)
Support network “And then even maybe possibly some kind of support group or community component for clinicians that are working with, uh, youth with autism and anxiety. To keep that network flowing and to have someone that they can, you know, ask questions to like, they don’t have that at their job or created at their job or outside of their job.” (9C)
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Theme 1. Training Content: The Presentation of Autism and Anxiety

Participants from all groups identified the need for clinician education about autism and anxiety and an understanding of the differences across autistic youth with whom they work.

Subtheme 1.1: Core characteristics of autism.

Clinicians described the limited knowledge of autism that professionals in their field have and recognized the need for “a very foundational training” (10C) on “the basics” (2C), or core characteristics of autistic people. One clinic leader further described how without training, clinicians likely would not understand the presentation or support needs of autistic youth and how they differ from neurotypical clients:

I would definitely want them to understand the differences between somebody with autism and somebody that doesn’t have autism...Understanding that the eye contact may not be there, and they may not look at you, and they may get frustrated easily. (3CL)

Participants within all groups also had a desire for clinicians to understand the heterogeneity among autistic people. Parents emphasized that “each child is very unique” (1P) and “they each, you know, bring a different perspective, a different experience” (15P). An autistic participant echoed the needs that were described by parents and provided examples of what clinicians should know about the learning differences of autistic youth:

I think it’s that different people learn differently. For example, I learn more by reading...and listening to people than by doing essays…yeah, and that some people are smart, and some people may be smart in different ways. (8Y)

Subtheme 1.2: Presentation of anxiety in autistic youth.

Many autistic youth, parents, and clinicians described the varied manifestations of anxiety in autistic youth. Some autistic youth reported getting upset at things a lot easier. An overload of sensory information or difficulty with communication can contribute to the manifestation of anxiety as externalizing behaviors (e.g., “aggression, self-injurious behaviors, property destruction”; 6C). These characteristics were consistent with a mother’s description of her child’s behavioral response, which she described as differing from typical presentations: “To the outside world, I think that a lot of these kids look dangerous... They don’t know how to communicate what’s going on. And so, they’re going to the basic natural communication. Which is physical and loud, yelling, screaming” (8P).

Participants also described common misconceptions that people have surrounding anxiety, including the assumption that anxiety will present as “...a crying kid in the corner or like [a] scared kid hiding behind their mom” (3P). Another parent referenced how their child’s autistic characteristics (e.g., attention to detail) become especially apparent in times of heighted anxiety. This parent was particularly discouraged when they described their child’s struggles to a clinician who was unaware of how anxiety may present differently in autistic youth.

Theme 2. Training Content: Intervention Delivery

Participants from all groups mentioned that core components of the training should be clinician education on how to deliver the intervention effectively, how a CBT-based intervention should be modified for autistic youth, and a team-based approach to intervention.

Subtheme 2.1: Intervention overview.

Clinicians mentioned that there should be extensive training surrounding the CBT-based intervention that clinicians will be expected to provide autistic youth with anxiety. For some clinicians, this included learning about the theoretical foundations of CBT and what is involved in providing a CBT-based intervention:

…Understanding how cognitive-behavioral therapies work and how, as a clinician, it works for these specific illnesses is important so that you understand the foundation. Because if you are just kind of faking it until you make it, you’re not really using the theory and you’re not really treating the best way that you can. (4C)

However, for others, this meant receiving training on a particular aspect of the intervention that they were unfamiliar with, such as psychoeducation or exposure therapy.

Subtheme 2.2: Considerations for intervention modification.

Although being educated on distinct components of CBT was a high priority, many participants identified needing to know about the characteristics of autistic youth (e.g., level of support needs, communication needs, developmental level, co-occurring conditions) that would inform adaptations made to the intervention. Furthermore, clinicians described the need for additional training with specific “examples of how you might need to vary your therapy” (2C) for autistic youth with co-occurring anxiety.

Rapport building between the clinician and youth was another priority for many autistic participants. For youth, this included the clinician allotting time in the session to get to “know them or maybe to like help them however they need it” (7Y). Several participants had a desire to discuss their interests with the clinician, which would result in “therapists [finding] out what someone with autism likes” (13Y).

In addition to building in scheduled time for rapport building, the clinician’s delivery of CBT was also identified as a key component that needs to be modified for autistic youth. The use of visual aids and providing the autistic youth with additional time to process information were described as helpful accommodations to support the learning differences of autistic youth.

Subtheme 2.3: Team-based approach to intervention.

Several autistic youth expressed concerns with parent involvement in therapy sessions due to a variety of reasons (i.e., compromised independence, parents as enablers). However, individuals who have a relationship with the autistic youth outside of the therapy session can be necessary and integral members of the intervention team:

I think it’s really important to try and involve the family in general, because I find a lot of times what happens in sessions and discussions amongst you know the therapist and myself (mother) and my son, when I take him in. And trying to communicate that back to my husband afterwards is kind of lost in translation, you know? (10P)

Participants highlighted specific aspects of the intervention that family members and teachers could be involved in. For example, several participants mentioned educating these groups on the co-occurrence of autism and anxiety and how to best support the autistic youth during CBT. However, as expressed by many of the participants, family and teacher involvement should not end with education. Parent participants voiced concerns that their autistic child “could do one thing in a session” but worried about how such skills would be “carr[ied] into the home” (12P). Therefore, clinicians should be trained in how to support family members of autistic youth and ensure that the skills being taught will generalize across contexts.

Theme 3. Training Format

Clinicians and clinic leaders reflected on the format of a training for CMH clinicians who would be implementing a CBT-based intervention for autistic youth with anxiety. Participants described the value of an engaging training program that offers individualized, ongoing support while the intervention is delivered.

Subtheme 3.1: Interactive approach to learning the material.

A few participants who reflected on the desired format of the clinician training mentioned the need for “a balance of kind of a didactic and experiential training” (3C) and saw value in both top-down and bottom-up instructional methods. However, most participants reported a need for clinicians to have direct involvement in the training. Participants described various interactive educational tools (e.g., case studies, vignettes, small groups) that would help them to digest the material and apply it to their own practice. For example, one clinician mentioned the value of observing both effective and ineffective ways of implementing exposure-based interventions. Additionally, clinicians recognized the need for autistic people to be involved in the training. This participation could range from co-leading the training to discussing their lived experiences or engaging in the practice sessions, all of which “could help people feel more comfortable working with that patient population” (3C).

Subtheme 3.2: Support network.

Clinician and clinic leader participants identified the need for training sessions to continue for clinicians “interested in extra training” (5CL). According to several clinicians, having a supervisor to offer feedback on a case-by-case basis would be invaluable:

I think consultation is important … be able to talk through cases and perhaps even have … someone that’s more seasoned in these modalities to shadow and give their feedback, too. (9C)

Similarly, several clinicians mentioned a clinician support network could encourage discussion among providers implementing CBT for autistic youth with anxiety and offer additional opportunities to “learn better strategies in engaging and working with those clients” (4CL).

Discussion

This qualitative study explored community members’ perspectives of training and support needs of CMH clinicians to implement a CBT-based intervention for autistic youth with co-occurring anxiety. Thematic analysis of responses from autistic youth, caregivers, CMH clinicians, and clinic leaders revealed the need for clinician training specifically on the presentation of autism and anxiety and the delivery of a CBT-brased intervention for this population. Clinicians and clinic leaders also revealed the training format as a necessary consideration to ensure the preparedness of CMH providers.

The Presentation of Autism and Anxiety

All community member groups in the current study identified a perceived lack of education and training that CMH clinicians have about autism. This finding is consistent with prior studies that explored experiences with CMH services for autistic individuals (e.g., Brookman-Frazee et al., 2012a; Brookman-Frazee et al., 2012b; Maddox et al., 2020). Autistic adults and parents of autistic youth have reported negative experiences in CMH centers due to providers’ limited knowledge about autism (e.g., Brookman-Frazee et al., 2012a; Maddox et al., 2020). CMH clinicians have also identified this lack of knowledge and limited autism training as barriers to providing quality services (e.g., Brookman-Frazee et al., 2012b; Lipinski et al., 2022; Maddox et al., 2020). The consistency in responses across all community member categories suggests the need for further training to improve the quality of services CMH clinicians can provide autistic youth with co-occurring anxiety and their families.

Respondents in the current study stated that it was essential for clinicians to receive training on the core features of autism, aligning with the perspectives of CMH clinicians and agency leaders in prior qualitative work focused on autistic adults (Maddox et al., 2020). Having a foundational knowledge of autism would be beneficial for clinicians who have not received autism training or have had few interactions with autistic youth. Parents and autistic youth had a desire for clinicians to understand autism as a spectrum and a neurodevelopmental difference rather than as a collection of deficits. This finding parallels the shift from a medical model to neurodiversity paradigm in autism research and practice, where autism is viewed as an integral part of an individual’s identity (Pellicano & den Houting, 2022).

Intervention Delivery

All four community member categories identified several important components of intervention delivery to be included in this CBT training program. Respondents overwhelmingly noted the importance of including education about specific components of CBT and exposure therapy. Research shows that clinician training addressing the fundamental steps of conducting exposure therapy can assist providers in feeling confident about intervention delivery (Harned et al., 2014). Respondents also emphasized that training should address characteristics of autistic youth that would inform intervention modifications and allow clinicians to more confidently implement this tailored program. Autistic participants noted that authentic rapport building in therapy sessions is a priority, which is particularly notable given prior work showing that clinicians report struggling to build rapport with autistic youth in CMH settings (Brookman-Frazee et al., 2012b). Specifically, our interview participants noted that allocating time to discuss their individual interests would allow CMH clinicians to connect with autistic clients and better engage them in treatment. Such findings mirror prior research that emphasizes the importance of therapeutic alliance between clinicians and their autistic clients, as such a relationship can contribute to the success of an intervention (Houlding, 2014; Klebanoff et al., 2019). Given this relationship, it is recommended that clinicians dedicate time during initial treatment sessions to form a healthy alliance with autistic clients (Brewe et al., 2020). Future research should determine how a CBT training program that emphasizes rapport-building affects the therapeutic alliance between CMH providers and autistic youth, as much of the work thus far has been examined within university clinics (Albaum et al., 2020; Brewe et al., 2020).

Autistic respondents also highlighted the importance of addressing treatment accommodations that support autistic youth, including use of visual aids and allowance of additional processing time during sessions. They noted that clinicians should be familiar with and be prepared to support their client’s learning style and differences. Additionally, many respondents described how the inclusion of family members and teachers in treatment is ideal when working with autistic youth. Caregivers of autistic youth and CMH clinicians noted that family involvement should extend beyond psychoeducation and should address how caregivers can support their autistic youth and help them to apply learned skills outside of sessions. Overall, participant responses broadly align with expert recommendations for modifying CBT for autistic individuals (e.g., Dickson et al., 2021; Reaven, 2009, White et al., 2018; Wood et al., 2015), critically adding the voices of key community member groups to this growing literature base.

Training Format

CMH clinicians and clinic leaders reflected on the importance of taking an interactive approach to a clinician training program, including both didactic content and experiential training (e.g., case studies, breakout groups) to help clinicians digest and retain this material. Additionally, participants emphasized the important role of autistic individuals in this training, noting that autistic individuals might share their own lived experiences and engage in applied practice to support in-depth learning of all trainees. Moreover, this inclusive approach was noted as a means of increasing trainees’ comfort in working with autistic individuals, which has been consistently noted as an area of difficulty for CMH therapists (e.g., Brookman-Frazee et al., 2012b, Maddox et al., 2020). Finally, participants described the importance of a consultation model, wherein clinicians can receive individualized and ongoing support. Participants also expressed a desire for accessing a support network or forum for broader discussion of strategies and lessons learned in working with autistic youth (Brookman-Frazee & Stahmer, 2018). Overall, these recommendations are well-aligned with the implementation science literature on producing meaningful behavior change in clinicians (e.g., Beidas & Kendall, 2010; Beidas et al., 2012; Herschell et al., 2010).

Limitations

There are several study limitations. Although our recruitment efforts included outreach to CMH settings that serve families from low income and underrepresented racial and ethnic communities, all parents included in the current study were mothers, and most were highly educated, White, and not of Hispanic, Latino or Spanish origin. Therefore, the current study does not represent the perspectives of fathers, families from racially and ethnically diverse backgrounds, and parents with limited educational backgrounds. It is probable that a more diverse sample could have generated additional recommendations for the training of clinicians working with autistic youth with multiple marginalized identities. Cultural and linguistic barriers may have impacted the participation of autistic youth and families from diverse sociocultural backgrounds. Researchers may consider forming partnerships with members of underrepresented communities to build trust and consider ways to elicit the voices of autistic youth with anxiety and their families. Second, participants were recruited from two Southern states in the United States; therefore, it is possible that these findings may not be applicable to CMH clinics in other geographical locations, including those outside the United States. Third, the interview protocol did not include questions regarding barriers that make it challenging for CMH clinicians to receive a CBT-based training for autistic youth with anxiety. Unprompted, several clinicians mentioned that coordinating their schedules around a full caseload would be challenging. Future research should explore the factors associated with successful implementation and delivery of CBT for CMH clinicians. Furthermore, this manuscript was limited to participant perspectives on a CBT-based training and did not explore the barriers and facilitators to supporting autistic youth with anxiety (e.g., leadership buy-in, client factors; Brookman-Frazee et al., 2020; Maddox et al., 2020) in CMH settings, which is a forthcoming manuscript. As such, researchers should fully capture the perspectives of autistic youth, caregivers, CMH clinicians, and clinic leaders regarding barriers and facilitators to quality mental health care for autistic youth with anxiety.

Conclusion

Although prior studies have captured a variety of perspectives regarding the training needs of CMH clinicians working with autistic individuals (e.g., Brookman-Frazee, et al., 2012a; Brookman-Frazee, et al., 2012b; Maddox et al., 2020), the current study highlighted the need for education and support around exposure-based CBT for autistic youth with anxiety specifically. Conducting a thorough needs assessment to learn directly from community members is critical for tailoring interventions for delivery in community settings and maximizing intervention uptake and sustainability (Wood et al., 2015). These findings will be used to tailor the CAPTA clinician training program to identified needs and preferences. Enhancing the capacity of CMH clinicians to address the unique needs of autistic youth with co-occurring anxiety would greatly improve access to care and reduce mental health disparities for this underserved population.

Supplementary Material

1

Highlights.

  • Anxiety-related supports are not tailored for autistic youth in community mental health clinics.

  • Semi-structured interviews were conducted with 49 community members.

  • Participants highlighted the need for clinician education of autism and anxiety.

  • A clinician training program that is interactive should be prioritized.

Acknowledgements

We are grateful for the contributions of our collaborators at the Harris Center for Mental Health and IDD and the Haymount Institute. Support for this project was provided by a grant from the National Institute of Mental Health to the final two authors (R34MH128439), as well as the UNC Intellectual and Developmental Disabilities Research Center (NICHD; P50 HD103573). Research reported in this publication was also supported by the Eunice Kennedy Shriver National Institute of Child Health & Human Development of the National Institutes of Health under Award Number P50HD103555 for use of the Clinical and Translational Core facilities. The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health.

Footnotes

Declaration of Competing Interest

The authors declare the following financial interests/personal relationships which may be considered as potential competing interests Dr. Storch reports receiving research funding to his institution from the Ream Foundation, International OCD Foundation, and NIH. He is a consultant for Brainsway and Biohaven Pharmaceuticals. He owns stock less than $5000 in NView. He receives book royalties from Elsevier, Wiley, Oxford, American Psychological Association, Guildford, Springer, Routledge, and Jessica Kingsley.

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Contributor Information

Shannon C. LaPoint, TEACCH Autism Program, University of North Carolina at Chapel Hill, USA

Grace Lee Simmons, TEACCH Autism Program, University of North Carolina at Chapel Hill, USA.

Julia Heinly, TEACCH Autism Program, University of North Carolina at Chapel Hill, USA.

Daylin Delgado, TEACCH Autism Program, University of North Carolina at Chapel Hill, USA.

Whitney S. Shepherd, Department of Psychiatry and Behavioral Sciences, Baylor College of Medicine, USA

Lauren Brookman-Frazee, Department of Psychiatry, University of California, San Diego, USA; Child and Adolescent Services Research Center, USA.

Eric A. Storch, Department of Psychiatry and Behavioral Sciences, Baylor College of Medicine, USA

Brenna B. Maddox, TEACCH Autism Program, University of North Carolina at Chapel Hill, USA Department of Psychiatry, University of North Carolina at Chapel Hill, USA.

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