Written by: Tamara Rosen, PhD. and Judy Reaven, PhD.
As many of us are aware, youth with autism spectrum disorder (ASD) often experience significant symptoms of anxiety, moreso than children without ASD. In fact, a recent study by Kerns and colleagues (Kerns, Rast, & Shattuck, 2020) found that the lifetime prevalence of anxiety disorders in ASD is close to 40% – a rate 2 to 5 times higher than that for other children with special health care needs (but not ASD). These findings converge with previous studies finding higher rates of anxiety in ASD compared to other samples or the general population (see Leyfer et al., 2006; Simonoff et al., 2008). Importantly, anxiety symptoms can interfere with many aspects of life, including participation in home, school, and community settings (Adams, Simpson, & Keen, 2018). Youth with ASD display “traditional” anxiety symptoms that are similar to those shown by neurotypical children, such as fear of separating from parents, worry about future events or making mistakes, and anxiety around social interactions. They may also display fears or worries distinct from those seen in neurotypical youth, such as worry about accessing a preferred interest, fear with a very specific focus (e.g., phobias of pizza bubbles or men with beards), worry around changes to routine, or anxiety when anticipating an unpleasant sensory experience (e.g., loud noises; Kerns et al., 2014; Kerns, Winder-Patel, et al., 2020).
Fortunately, there are effective treatments available for youth experiencing anxiety. Cognitive-Behavioral Therapy (CBT) has garnered 50 years of strong research support, thus establishing it as an effective, evidence-based, and first-line treatment for youth with anxiety (Higa-McMillan, Francis, Rith-Najarian, & Chorpita, 2016). In CBT, the client is supported in developing strategies to manage anxiety, including healthier and more realistic thoughts, somatic management strategies such as deep breathing or progressive muscle relaxation, and gradually approaching feared objects or situations (e.g., Abramowitz, Deacon, & Whiteside, 2011).
In the past 10-15 years, we have seen the development of CBT programs created specifically for youth with ASD (e.g., Facing your Fears; Reaven, Blakeley-Smith, Nichols, & Hepburn, 2011; Exploring Feelings; Attwood, 2004) as well as adaptations to CBT programs originally developed for neurotypical youth (e.g., Cool Kids; Chalfant, Rapee, & Carroll, 2007; Behavioral Interventions for Anxiety in Children with Autism; Wood et al., 2009). There are now many Randomized Control Trials (RCTs), review articles, and meta-analyses of these programs, which suggest that overall, CBT is an effective anxiety treatment for youth with ASD (Perihan et al., 2020). While this increased attention and support for CBT in ASD is incredibly positive, this has not always been the case. Around 18 years ago, there was virtually no research on CBT for individuals with ASD, while that for neurotypical individuals was flourishing. In fact, there was little research available on treating anxiety in ASD at all. Of the available studies back then, most used purely behavioral approaches using a case study or single-subject design, and the quality of those studies was variable (for a review, see Rosen, Connell, & Kerns, 2016). The state of the literature mirrored what was going on clinically, in that mental health providers felt ill-equipped to treat anxiety symptoms for clients with ASD, and ASD providers did not feel comfortable treating co-occurring mental health symptoms in their clients. In other words, the silo that we still see today (see Maddox et al., 2020), and that many of us are working to bridge, was negatively impacting the availability and accessibility of anxiety treatments for youth with ASD.
The Facing Your Fears (FYF) Program (Reaven, Blakeley-Smith, Nichols, & Hepburn, 2011; Reaven et al., 2012, 2018), was born out of an attempt to bridge this treatment gap. FYF was designed for youth with ASD, wherein CBT approaches were adapted to make them more accessible for this population. Recognizing that most clinicians at the time had experience either in CBT or ASD (but not both), the program was developed under the principal that experience in one of these areas, and not necessarily both, was sufficient for the delivery of FYF. Additionally, with a user-friendly manual, the CBT treatment could eventually be more easily implemented by mental-health or ASD providers.
FYF is an outpatient, multi-family, evidence-based CBT group treatment for children and adolescents ages 8-14 with average intellectual abilities (soap box on the latter criterion to follow), and a primary co-occurring anxiety diagnosis (social, generalized, separation anxiety, or specific phobia). If other co-occurring conditions are more impairing (e.g., depression, OCD) than anxiety symptoms, then FYF may not be the right fit. The group consists of 4-5 families who meet for 90-minute weekly sessions for 14 weeks. Adaptations to core CBT content include opportunities to practice social skills, user-friendly visuals and worksheets, and hands-on activities. Additionally, parents attend all 14 sessions, and participate in the comprehensive FYF parent curriculum.
During the first half of the program, the focus is on anxiety psychoeducation and skill building. Through activities, discussions, and worksheets, participants establish a shared vocabulary for emotions (Attwood, 2004), identify situations that lead to anxiety, how the body feels when anxious, strategies for managing anxiety (e.g., helpful thoughts, relaxation strategies) and increase motivation to work on anxiety symptoms. A crowd favorite is often the “worry bug” activity, in which participants learn to “externalize” their symptoms; in other words, separate the person from the problem (March & Mulle, 1998). “Fear-facers” are empowered to take charge over their anxiety, and establish language that reflects this empowerment (e.g., “this is just my worry bug.”). In the activity, participants are encouraged to make a mental picture of their worry and then create an image of their “worry bug” using arts and crafts materials (e.g., Play-Doh, markers and paper). They then create a “helper bug” and squash their “worry bug.” In this activity, we have had the pleasure of seeing Ginny Weasley defeat Voldemort and “Why Hello Blade” slay “nightmare.”
During the second half of the program, these skills and principles are put into action as participants identify their “fear-facing goals,” create exposure hierarchies, and face their fears in session. Participants are encouraged and rewarded for facing their fears in session, and for practice outside of sessions. As an example, a participant with a fear of flushing toilets might identify the following steps in collaboration with their parent(s) or guardian(s): 1. stand outside of the bathroom 2. stand inside the bathroom 3. stand inside the bathroom while someone else flushes the toilet 4. flush the toilet. The fear-facer and parents or guardians would also identify rewards for each exposure practiced in-session, at home, or at school (e.g., 15 extra minutes of screen time) and a bigger reward for reaching the target goal of flushing the toilet (e.g., a new video game).
The first published efficacy trial of FYF was conducted in 2009, and there have been several clinical trials, including randomized control trials, since then (see Reaven et al., 2009; Reaven et al., 2015, 2018; Reaven, Blakeley-Smith, Culhane-Shelburne, et al., 2012; Reaven, Blakeley-Smith, Leuthe, Moody, & Hepburn, 2012). Most of the trials included school-age children, ages 8-14 years. Recognizing that adolescents with ASD are particularly vulnerable to anxiety, yet under-studied, FYF was also adapted for adolescents ages 13-18 years (Reaven, Blakeley-Smith, Leuthe, et al., 2012). Overall, results indicate that children and teens show significant reductions in anxiety symptoms following treatment in clinical settings compared to control groups. These studies also support the feasibility and acceptability of the program, with parents and participating youth generally rating the activities as “very helpful” or “helpful.” To expand upon these findings and increase access to care for young adults with ASD, a college adaptation of FYF, funded by the Organizaton for Autism Research, and led by Drs. Brian Freedman and Jessica Monahan, will start this fall at the University of Delaware.
There have been additional adaptations to the original FYF program since its inception. In 2016 (though perhaps ahead of our time!) Hepburn and colleagues examined the feasibility of delivering FYF via telehealth, with the overall goal of improving access to care for families who might otherwise not be able to access the intervention (e.g., families who live in rural areas and/or far away from specialty clinics). True to our goal of improving access for underserved families, we included youth with ASD with a range of intellectual abilities (the soap box is coming). Adaptations included fewer and shorter sessions, fewer families, more parent involvement, briefer parent-youth activities, and no youth only activities. Following the intervention, the treatment group showed significant reductions in anxiety symptoms compared to the wait-list comparison group. There were also increases in parents’ confidence in handling challenging situations with their children, and high rates of program satisfaction reported by both parents and children. However, there were also some technical difficulties that sometimes interfered with service delivery or family participation (perhaps not all that surprising to many of us telehealth newbies!). Here at JFK Partners, we abruptly transtioned to delivery of FYF via telehealth last spring and got to see for ourselves what challenges the format can bring. However, we have also seen the positive treatment gains that outweigh those technical difficulties. Based on our own lessons learned, we have compiled a list of modifications to consider when implementing the program via telehealth, and we hope it is a helpful resource for other providers delivering the program via telehealth.
Consistent with the original intent of FYF, implementation efforts are also underway. Most group trials of CBT take place in clinic settings where Caucasian or high-SES participants are over-represented. Thus, yet another treatment gap is the lack of accessibility to mental health services for students with ASD from traditionally underserved racial minority, ethnic minority, or low SES backgrounds. To increase accessibility, FYF has been adapted for schools for delivery by interdisciplinary school providers (Reaven, Reyes, Pickard, Tanda, & Morris, 2019). With the goal of maximizing sustainability, acceptability, and feasibility of the program, FYF – School Based Version (FYF-SB) was developed based on input from community stakeholders, including school providers and parents of children with ASD and anxiety (Reaven et al. 2020). Adaptations to the original FYF program include shortened session time (core CBT concepts were retained but shortened) and less parent involvement. The first published trial took place in Singapore and was delivered by allied educators (Learning and Behavior Support – AEDs/LBS; Drmic, Aljunied, & Reaven, 2017). Cultural adaptations were also made, such as using more culturally appropriate emotion vocabulary and video modeling. Findings demonstrated that parents and youth reported significant decreases in anxiety symptoms, including generalized, separation anxiety, panic symptoms and school avoidance symptoms. Parents reported that the program was useful and school staff reported high satisfaction with the program. A more recent pilot feasibility study conducted in public schools in Colorado area was also associated with reduction in anxiety symptoms (results from Reaven et al. are under review). Additionally, school-providers reported that FYF-SB was easy to deliver and benefitted their students, and many indicated that they planned to continue to deliver the program in the following school year.
Although CBT has demonstrated effectiveness for the treatment of anxiety in youth with ASD, these programs have generally not been designed for youth with Intellectual Disabilities; in fact, these studies usually exclude individuals with lower intellectual disabilities (e.g., IQ below 70 or 80). There is also sometimes an erroneuous assumption that individuals with ID are unable to access the “C” in CBT and/or benefit from emotion regulation skills (Rosen et al., 2016). Therefore, most anxiety treatments for people with ASD and ID focus on purely behavioral interventions, though these strategies may be insufficient for addressing the generalized or social worries these individuals do in fact have (Dagnan and Jahoda, 2006).
Aware of the treatment gap impacting adolescents with ASD and ID, Blakeley-Smith and colleagues have adapted FYF for teens with ASD and ID. Adaptations include enhanced visual supports, more concrete language and simplified activities, increased video and in-vivo (e.g., live) modeling, and more emphasis on parent and school involvement. Preliminary findings show that teens with ASD and ID who participated in the adapted FYF program were able to successfully learn and independently use both cognitive and emotional coping strategies, challenging the existing paradigm. Hot off the press, results of our published trial from this year (Blakeley-Smith et al. 2021) also show that the program was feasible and acceptible, and associated with reductions in anxiety for participants. A randomized trial examining the efficacy of this program in more rigorous manner is planned to start this fall at JFK Partners (whether in the clinic or by telehealth due to COVID-19 remains to be seen).
Our initial goal was to address the treatment silos that negatively impacted access to mental health services for individuals with ASD. Since the outset of FYF, we have made progress in bridging the treatment gap by adapting the FYF program in various capacities. That is, our research program has moved from a focus on school-aged youth with ASD, to adolescents with ASD, and more recently to adolescents with ASD and ID and college students with ASD. To make the program accessible to more people with ASD, we have adapted the modality of program delivery to include telehealth and school-based settings. As mentioned earlier, FYF was designed with the assumption that experience in CBT or ASD, and not necessarily both, may be sufficient for the delivery of FYF. About 15 years later, we now have evidence that school-based FYF can be delivered by non-mental health providers (at least in school settings), which can increase the capacity to serve anxious youth with ASD. Overall, we hope to continue to adapt the program to increase inclusion of individuals across the spectrum in the coming years. Interested in delivering the program for the clients you serve? Read more about Facing Your Fears here and feel free to contact Judy Reaven at [email protected] for more information. Together we can support individuals with ASD!