Abstract
The findings from this research provide preliminary support for the adaptation of an existing small-group, parent-mediated intervention (Cool Little Kids) to prevent and reduce anxiety among autistic children.
Participation in activities across a range of contexts (e.g., home, school, community) is viewed as a measure of quality of life (World Health Organization, 2007). However, autistic children appear to have restricted participation compared with children with other disabilities and their neurotypical peers (Askari et al., 2015). Optimizing support for autistic children and their families to participate in activities is an important focus of occupational therapy. Participation is a complex construct involving a transactional relationship between personal and environmental factors, which includes their family members (Imms et al., 2017). Supporting participation in life activities requires an understanding of the interplay between personal characteristics and environmental factors.
A personal factor that may affect the ability of autistic children to participate in day-to-day activities is anxiety. Anxiety is one of the most common co- occurring conditions for people with a diagnosis of autism (van Steensel & Heeman, 2017). In the first study to investigate the presence of anxiety in 5- to 6-yr-old autistic children, Keen et al. (2019) found that although only a small number of children had a formal diagnosis of anxiety, 98% of the participants were reported to experience anxiety in at least one aspect of their life, with the most common area being challenges with uncertainty. Meta-analyses have shown that up to 62% of young children on the spectrum meet criteria for a co-occurring anxiety disorder (Vasa et al., 2020). Both prevalence rates and severity of anxiety symptoms are greater for autistic children than for neurotypical children and those with other developmental conditions (e.g., Down syndrome, intellectual and language disabilities; van Steensel & Heeman, 2017).
Evidence is increasing regarding the negative impact of anxiety on (1) participation in activities inside and outside of the home (Adams & Emerson, 2021), (2) school performance (den Houting et al., 2022), and (3) quality of life of the child and their parents (Adams, Clark, & Simpson, 2020). In fact, one study has shown that a child’s level of anxiety symptoms has a more notable influence on the frequency of participation in home activities than their level of autism characteristics (Ambrose et al., 2022). Given that enhancing participation in activities across settings and improving quality of life are key areas encompassed in occupational therapy domains of practice (American Occupational Therapy Association, 2014), the impact of anxiety on such outcomes should be considered in both occupational therapy practice and research.
The critical importance of anxiety in occupational therapy is further demonstrated through longitudinal studies that have documented how sensory overresponsivity (1) precedes the onset of anxiety among autistic preschoolers and (2) is predictive of changes in anxiety (Green et al., 2012). This finding means that occupational therapy practitioners can have a key role in preventing, identifying, and reducing anxiety among young autistic children. It is therefore important for practitioners to have knowledge of anxiety behaviors and effective supports for children on the autism spectrum. In addition to typical symptoms of anxiety also experienced by neurotypical children, autistic children may experience different symptoms unique to autism (Kerns & Kendall, 2012). These symptoms have been termed autism-specific anxiety characteristics and include symptoms of anxiety related to sensory experiences, focusing on preferred interests.
Moreover, research suggests that the relationship between anxiety and sensory constructs is influenced by unpredictability of the environment (Williams et al., 2021)—a key challenge for children on the spectrum (Keen et al., 2019). When faced with anxiety-provoking uncertain events, including sensory uncertain situations (e.g., parties, shopping, busy or noisy places), children may try to avoid the situation, thus reducing their participation in daily activities (Goodwin et al., 2022) and reinforcing their anxiety. Given the overlap between anxiety and sensory constructs, and the impact of these factors on children’s participation in life activities, professionals such as occupational therapy practitioners who support autistic children across more than one of these areas need to consider the potential influence of anxiety and intolerance for uncertainty on client challenges, goals, and interventions.
The reported prevalence and impact of anxiety among autistic children highlight the importance of investigating how children can be supported to reduce the experience of anxiety and, in turn, its impact on their functioning. This approach includes considering interventions that can be conducted by occupational therapy practitioners and other allied health professionals. One such tool is the Cool Little Kids (CLK; Rapee et al., 2005) program, which is a group-based, six-session, parent-mediated program. Sessions are attended by parents only (children do not attend). The program uses cognitive–behavioral therapy (CBT) techniques to give parents effective tools and strategies to support their young child, with the aim of preventing or overcoming anxiety. CLK has demonstrated excellent outcomes for neurotypical children; randomized controlled trials have shown both a considerable reduction in child anxiety postintervention and prevention of anxiety disorders 3 yr later (e.g., Rapee et al., 2010).
The core treatment strategy in this program is graded in vivo exposure. Similar to systematic desensitization (often used by occupational therapy practitioners when supporting autistic clients with feeding challenges [e.g., Suarez & Bush, 2020]), this approach carefully scaffolds the child’s exposure to a feared situation and therefore primarily works via extinction to shift expectations of threat (Mychailyszyn, 2017). In a pilot study, Bischof et al. (2018) showed that CLK led to a reduction in anxiety scores for preschool-age autistic children. Parents who attended this group found it useful with respect to their child’s anxiety but suggested further adaptations should include content tailored to autism.
Aim and Research Questions
Supporting families to reduce barriers to participation is an important area of occupational therapy. Anxiety is one such barrier than can influence participation. The aim of this project was to pilot the autism-specific CLK program with a small group of parents of autistic children to inform the feasibility and acceptability of the intervention for use within a future, larger scale trial. The current pilot project was developed to address the following research questions: Is an autism-specific intervention for pre schoolers with varying levels of anxiety acceptable and feasible for parents of young autistic children? If so, what recommendations did parents of young autistic children make regarding further changes to its design and implementation? Did parents perceive the autism-specific, group- based, parent-mediated intervention to be an effective way to enhance their knowledge and understanding and to support feelings of anxiety in their child, and were these enhancements maintained?
Method
Study Design
Ethics approval was obtained through the Griffith University Human Research Committee and the AEIOU Research and Innovation Committee board. The pilot study was conducted to evaluate the acceptability and feasibility of the autism-specific CLK program for parents of autistic children. A focus group was conducted with participants at the conclusion of the program. Follow-up semistructured interviews were conducted at 4 mo to explore parents’ views on the acceptability, feasibility, and perceived effectiveness of the intervention and to document any suggestions for improvement. Pre–post measures of child anxiety were also collected to descriptively explore changes from pre- to postintervention. All data collection happened before the onset of the coronavirus disease 2019 (COVID-19) pandemic.
Participants and Recruitment
Parent participants were recruited through a local autism-specific early intervention center and the center’s networks (e.g., email contacts, lists). Participants were eligible to take part if they had a child between ages 4 and 7 yr with a diagnosis of autism spectrum disorder, could attend the center at the specific times of the intervention, and were interested in the parent group “helping parents to manage the early signs of anxiety in young children with autism.” Because the autism-specific CLK program aims to reduce or prevent the occurrence of anxiety, the children did not need an anxiety diagnosis to participate, and children were not excluded on the basis of any co-occurring conditions. The 4 interested parent participants were provided with an electronic information and consent package, followed by an online questionnaire to collect demographic and preintervention data.
Four participants commenced the program, 3 of whom completed and consented to the follow-up focus group and interviews. One parent withdrew after the first session because of challenges with time commitment. Parents (two mothers, one father) all identified as a full-time caregiver, and all had a tertiary education. All children (two male, one female) had a formal diagnosis of autism, with scores greater than the suggested cutoff (≥15) on the Social Communication Questionnaire (Rutter et al., 2003). The age of each participant is stated in Table 1.
Children’s Ages and ASC–ASD Scores at Pre- and Postintervention
Note. ASC–ASD = Anxiety Scale for Children With Autism Spectrum Disorder.
Program Description
The CLK–Coping with Uncertainty in Everyday Situations (CUES) program (described in more detail in the protocol article, Adams et al., 2021) uses the original six-session CLK structure and group format; however, it also integrates content that addresses aspects of autism-specific elements of anxiety relating to intolerance of uncertainty (adapted from the CUES program; Rodgers et al., 2017). CLK–CUES maintains the CBT-based information and approach of CLK, but it incorporates autism-specific information (e.g., on sensory profiles and their overlap with anxiety) and more relevant discussion tasks. It also includes two half sessions on intolerance of uncertainty and how to support children to feel more confident in uncertain situations. The graded exposure approach is applied both to the anxiety-specific goal (e.g., speaking in class) and to dealing with uncertainty within a situation.
Parents attend each session in person and are provided with printed materials to reinforce the verbal content and discussion topics of each session. The printed materials also provide the worksheets for home and associated task descriptions. In the first session, parents identify individualized goals to address during the program. Example homework tasks include creating a graded exposure ladder of steps toward the big goal (e.g., if the big goal is speaking in class, the steps may be speaking to just the teacher, then to one friend, then two friends) and completing steps on the ladder. The CLK–CUES program was delivered by a clinical psychologist with experience in both autism and anxiety.
Measures
Anxiety Scale for Children With Autism Spectrum Disorder Parent Form
The Anxiety Scale for Children With Autism Spectrum Disorder (ASC–ASD; Rodgers et al., 2016) is an autism-specific measure of child anxiety, designed to measure both typical and autism-specific symptoms of anxiety. Although originally designed for parents to report on children age 8 yr and older, it has been used successfully to describe anxiety symptoms among autistic children age 5 yr and older (e.g., Keen et al., 2019); moreover, it has good to excellent reliability and validity (Rodgers et al., 2017). It consists of 24 items, each rated on a Likert scale ranging from 0 (never) to 3 (always), with higher scores representing more anxiety. In this study, only the total score (i.e., the sum of all 24 items) was used. Cronbach’s α for the total score in a sample of autistic children was excellent (α = .91; Adams et al., 2018). Scores greater than 24 are considered a specific indication of significant anxiety (Rodgers et al., n.d.). The ASC–ASD Parent Form (ASC–ASD–P) was administered before the intervention and 1 wk after completion of the intervention.
Focus Group
One week after completion of the program, participants were invited to join a focus group, with the purpose of providing evaluative feedback on the program. This form of feedback is considered useful in improving programs (Patton, 2015). All participants attended the focus group, which was conducted by Kate Simpson. This coauthor has both experience in conducting focus groups and a research background in autism and anxiety but was not involved in the program delivery. The focus groups were semistructured, with open-ended questions followed by prompts to elicit information on (1) the usefulness of the content (e.g., “In terms of the content, what did you find useful/not useful?”), (2) the delivery of the program (e.g., “How did you find the time provided to implement the strategies?”), and (3) recommendations for improvement (e.g., “In what way, if any, could the program be improved?”). The focus group took approximately 90 min and was audiotaped and transcribed by a professional organization.
Semistructured Interview
Participants took part in a semistructured interview 4 mo after the program. Interviews were conducted by Simpson, who has expertise in conducting interviews. Participants selected the location of the interview, with two being conducted in person at the research center and the third conducted via video conferencing. Open-ended questions were used, followed by prompts to elicit and clarify information on (1) life since the training (e.g., “What have things been like with [child] since doing the program?”); (2) applying the training to practice (e.g., “What are some of the things you have been doing to support [child]?”); and (3) recommendations for future program delivery (e.g., “Are there things you can think of that could be added to the program or taken away that would have provided you with more support?”). Interviews ranged from 20 to 40 min and were audiotaped and transcribed by a professional organization.
Data Analysis
Transcriptions from the focus group and interviews were checked with audio recordings. To answer Research Question 1, we deductively coded the focus group and interview data in terms of the following evaluation categories: (1) acceptability of content, (2) acceptability and feasibility of delivery, and (3) recommendations for future delivery. Initial analysis was undertaken by Simpson. Discussions were then held with the team to ensure that codes were representative of the data. To answer Research Question 2, we inductively coded the focus group and interview data to learn about the parents’ experiences in terms of their knowledge gained and their application of the knowledge in their context. Coding was an iterative process conducted by Simpson, who read the transcripts, developed codes, and discussed and refined codes with the team. A second team member (Stephanie A. Malone) read transcripts to ensure that codes were representative of the data. The pseudonyms of Toni, James, and Mia are used throughout the results to reflect the individual experiences of the 3 parents who participated in the focus groups and interviews. Research Question 2 was also supported by reporting descriptive data on the children’s anxiety scores pre- and postintervention with ASC–ASD parent report data.
Results
Attendance and Engagement
Four parents began the intervention, and 3 parents attended all six sessions. One parent withdrew after the first session because of time commitments.
Parent Reflections on the Acceptability, Feasibility, and Usefulness of the Cool Little Kids–Coping With Uncertainty in Everyday Situations Program
Parents provided feedback on the program content, program delivery (which generated a discussion on the role of the facilitator), and their recommendations for future delivery. Although parents were reflecting on CLK–CUES, many of the issues discussed (e.g., autism-specific content, pace of content, expertise of facilitator) would be relevant across multiple intervention offerings.
Acceptability and Usefulness of Program Content
Parents reflected on the content provided, with Toni describing it as “a good introduction into thinking about how anxiety affects your child and how you can start to understand what makes it better and what makes it worse.” James found that the program offered him a balance of content and activities, reflecting that if anything else was added, “it might’ve been too much to take on board all at once.”
In the follow-up interviews, Toni and Mia spoke of the challenge in remembering the strategies. Since doing the program, Mia had continued implementing some strategies but was not able to remember the others: “I feel like I am naturally taking onboard the realistic thinking and the stepladder approach without too much trouble, but some of the other tools, they’re just not as clear in my mind.” This sentiment was echoed by Toni: “It is hard to remember from that long ago.”
Acceptability and Feasibility of Program Delivery
The small-group format was viewed positively by all parents, and the individual support provided made them more likely to try things. James contrasted this format to his previous larger (15 members) group experience in which he did not feel he had received individual attention. Although parents thought the group size could increase to 5 participants, they felt it was important the group be composed of only parents of autistic children. The shared understanding of experiences and being able to learn from one another were viewed as beneficial. Toni said, “The sorts of challenges that our kids have might be a bit different to typical kids,” and Mia appreciated having “that connection.”
The weekly format of sessions allowed limited opportunity to practice the strategies, particularly if family crises occurred or if children felt unwell. Parents discussed the possibility of extending the period between sessions but felt this additional time would make the program too long. Supporting this opinion, Mia said, “I would’ve forgotten what we talked about,” and James felt that the regular sessions meant his “awareness could stay attuned.” They agreed that despite the program being sometimes challenging, they preferred the weekly format for its consistency. Overall, they felt the time and duration of the sessions and the program worked well for them, reporting that “it would be hard to cover the content in less time” (Mia).
Role of the Facilitator
The parents spoke about the importance of the facilitator having knowledge about both anxiety and autism. Toni reported that it is “vital to have someone who understands autism, and not just anxiety on its own.” The expertise of the facilitator was further highlighted by Mia, who discussed how they all had different examples because of the different ages and developmental stages of their children, but the facilitator was able to “link it back to the subject matter.”
In addition to the knowledge of the facilitator, James appreciated the facilitator’s acceptance and normalizing of setbacks and obstacles when practicing strategies. He noted that the facilitator explained, “That’s life. You’ve just got to accept those ups and downs . . . We’ll try again when we’re ready to reapply it.” This approach was valued because the setbacks “could be disheartening otherwise” (James).
Recommendations for Future Delivery
One of the aims of the first session was for parents to identify goals relating to their child’s anxiety that they could work on over the subsequent sessions. Parents reported that they had some difficulty in determining their goals in the initial session, with 2 parents feeling they chose goals that did not work well with the stepladder activity (i.e., a strategy to reduce anxiety). They suggested that provision of information before the session may give them time to think about the goals. They also felt that doing a simple, practice stepladder task first would help them prepare their own stepladder.
On a practical note, they found keeping track of the weekly booklets was sometimes difficult and suggested having a folder with dividers to make templates and activity worksheets more readily accessible. Toni also suggested that brainstorming a list of child- appropriate rewards would be helpful. Mia suggested a flowchart to aid in self-reflection, “to give people a bit of a model to work through when things haven’t worked.”
For each child, only one parent or caregiver attended the sessions. James spoke about the subsequent difficulty of implementing the strategies when other caregivers were unfamiliar with the program (e.g., other parent or grandparents). The group discussed possible options to alleviate this problem, including providing caregivers with a summary of the weekly content or an information session; however, Mia did not think this method would have the same effect. For her, learning was a process that occurred through “stage learning,” “thinking,” and “looking at what’s happening.” James did not think that having other family members attend the program would be feasible; he also did not think they would “appreciate it as much, because they didn’t deal with it day-in, day-out.” Toni and Mia also suggested that a follow-up session would be useful: “maybe a month later or something, just to remind people of what the strategies were and see how they’re going with things” (Toni).
Knowledge and Experience Gained
Discussion with parents on what they felt they had learned and how they applied their learning to practice generated two themes. The first theme was “taking a different approach,” which involved (1) “changing my behavior,” (2) “looking deeper,” and (3) “being responsive to my child.” The second theme, “seeing an interplay between anxiety and autism,” involved (1) “autism is a big piece of the anxiety puzzle” and (2) “anxiety is missing in professional conversations.”
Taking a Different Approach
Through the training and application of the information learned, parents recognized that some of their previous strategies may not have been effective in supporting their child’s anxiety. This recognition led to changing their behavior, looking deeper, and being responsive to their child.
Changing behavior.
All parents identified “jumping in too soon” as their previous behavior. Both Toni and Mia talked about how they would prepare their child for an event (e.g., extra visits, taking photos, creating social stories). After the training, they both decided not to provide extra support for an event; instead, their child received the same preparation as their child’s peers. They felt this reduced level of preparation was adequate, with Mia commenting, “If we overprepared, we would have created more anxiety.” Changing their behavior was not always easy. Mia described her struggle with not jumping in and having to resist using her previous preparation strategy (social stories), saying, “My brain automatically went to, ‘What can I do to prevent this being a disaster?’” Mia also realized that her “exuberance” may contribute to her son’s meltdowns, and she was learning to be “a little bit low key about things.” Toni no longer felt she had to respond to all her son’s questions about new experiences, and James adjusted his method of responding; he said, “It’s hard because I’m a talker, but when she’s in an emotional state, that’s a pointless exercise.” Since completing the program, James considers himself more “mindful” and able to look for “behaviors and triggers and [try] to catch things before they got out of hand.”
Looking deeper.
As a result of the training, parents recognized the need to “look a little harder” (Mia) and “think deeper about what might be the cause” (James) when identifying factors that may contribute to their child’s behavior. The training resulted in James being more aware of “subtle differences” in behavior that may accumulate over time, explaining, “We don’t always put the two together. Now I can put it together and go, ‘Okay, this is the domino effect of whatever the precedent was.’”
Being responsive to my child.
Parents identified that recognizing when their child may be more or less able to manage the demands of a situation was important for their child’s development. For Toni, this insight involved no longer assuming that her son could not do things and instead “gauging what he can do on the day.” Drawing on her learning, she now recognized signs that indicated when her child was less able to manage situations (e.g., “tired,” “wakes up crying,” “extra sensitive and gets upset over little things,” “avoids getting ready for [kindergarten]”). Likewise, Mia realized that she needed to acknowledge when her child was ready: “Sometimes he’s verbally telling me that he’s ready for the next level.” She went on to say, “If I’m there and holding his hand, he’ll take advantage of that situation, but if I’m not, he seems to find the fortitude.” However, Mia did require self-reassurance that her son was able to do the activity or task before allowing him more independence, saying, “It’s giving me the bravery . . . that things will progress if I just give him those little bit of stretching.”
Seeing an Interplay Between Anxiety and Autism
Parents spoke about gaining an increased knowledge and understanding of autism, which made them realize that autism is a big piece of the anxiety puzzle. This understanding led to their awareness that anxiety is often missing in professional conversations about their child’s behavior.
Autism is a big piece of the anxiety puzzle.
The program gave parents an increased understanding of autism and anxiety and shifted their perceptions of how they viewed their child’s behavior. Toni said she gained “more clarity about the different sources of anxiety for kids on the spectrum. Like the sensory, and the lack of certainty.” She went on to discuss how learning about autism was an important part of the training: “I think that’d be leaving out a big piece of the puzzle if it [the program] was just anxiety.” James explained how previously he had not recognized some of his daughter’s autistic behaviors because they were “not what I expected.” Through the training, he learned to recognize her autistic behaviors, saying, “Ah, actually, that’s what it is. Okay. Now I see.” He described himself as previously being “too pigeonholed” in his thinking. He identified that “sometimes she’s overstimulated, sometimes understimulated,” whereas he had initially assumed that “autism would be one or the other, but I can see now that she can fluctuate from one to the other.” In particular, parents spoke of the change in routine and sensory responses as characteristics of autism that were related to their child’s anxiety.
Likewise, parents acknowledged that greater understanding of anxiety could help explain their child’s behavior. Mia talked about how “we’ve just been caught out and so shocked by his behavior”; yet, she now realizes, “it’s whether the anxiety is there or not, it’s not so much about his ability.” Before commencing the program, James had not seen anxiety as a large issue. Afterward, he commented, “I’m seeing that most of [R’s] issues do stem back to the anxiety. So that’s been a monstrous turnaround in my mindset.”
Anxiety is missing in professional conversations.
Toni and James discussed how they found professionals describing their child’s behavior in terms of their autism characteristics without regard to possible anxiety. As a result, Toni felt this approach led to parents not recognizing anxiety in their child, saying, “The therapist will call it sensory processing issues . . . or emotional regulation problems. They won’t say, ‘Oh, your child has a lot of anxiety.’” This realization has led James to seek additional professional support from a psychological perspective. He went on to explain how he felt that therapists “were treating the outcomes or the behaviors rather than the causes . . . I guess I know sensory is a typical autism thing, but I think [R] will have an anxious response to a sensory incident so . . . hand-in-hand a bit.”
Anxiety Scale for Children With Autism Spectrum Disorder Pre- and Postintervention Data
Children’s pre- and postintervention ASC–ASD–P data are summarized in Table 1. The preintervention ASC–ASD data revealed that two of the children (Child 1 and Child 3) experienced significant levels of anxiety, as indicated by scores ≥24 on the ASC–ASD. After completion of the intervention, all children presented with levels of anxiety below this cutoff.
Discussion
In this study, we describe the perceived acceptability, feasibility, and usefulness of an anxiety prevention– reduction intervention program specifically modified to support parents of preschool autistic children. Three of the 4 parents completed the program. Parents reported positive perceptions of the usefulness of the program, specifically, appreciating the practical strategies and the autism-specific content. Parent qualitative feedback corresponded with outcomes on standardized measures because two children showed a reduction in anxiety on the ASC–ASD–P postintervention, with scores postintervention no longer indicating clinically significant levels of anxiety. Although these reflections relate to their experience of the CLK–CUES intervention, many of the key findings, discussed in turn next, can inform group-based delivery of a wide range of approaches used by occupational therapy practitioners.
Importance of Group-Delivered, Autism-Specific Content That Considers Intersecting Elements of a Child’s Autism Profile
By incorporating theory-driven content based on autism-specific models of anxiety (i.e., the content from CUES) into an established anxiety intervention (CLK) and by using autism-specific measures of anxiety, we took a small step in this study toward the recognized need to develop interventions that are age specific (i.e., developmentally sensitive) and that account for the cognitive, linguistic, and behavioral profiles of young autistic children that can affect their anxiety presentation and experience (Vasa et al., 2020). In particular, parents identified the complex relationship between autism characteristics (e.g., sensory overresponsivity) and their child’s anxiety. For example, James identified his child’s response to sensory stimuli and anxiety as going “hand-in-hand.” The relationship between sensory overresponsivity and anxiety is complex and has been identified as parallel, relational, and contingent (Williams et al., 2021). Consideration of anxiety is important when occupational therapy practitioners are supporting autistic children who demonstrate sensory overresponsivity.
The results of this study were promising in terms of parent attendance and pre–post measures of child anxiety. The qualitative feedback from participants was also largely positive. Parents noted their appreciation for the group format, autism-specific content, and the expertise and knowledge of the group facilitator. Parent-to-parent support is an important part of a support network and has been shown to be a protective factor against adverse parental mental health outcomes (Moody et al., 2019). Despite this finding, the majority of parent training programs for school-age autistic children are delivered one-to-one (Black & Therrien, 2018), potentially reducing the additional benefits that may come from the group setting. Parents from the pilot study of the unmodified CLK study (Bischof et al., 2018) suggested autism-specific content and examples, so it was positive that parents in this study noted the incorporation of these suggestions alongside the content inspired by CUES.
Autism-specific knowledge of the professional providing support has been identified as a key factor in accessing both psychological (Adams & Young, 2020) and physical (Mason et al., 2019) health care. This finding is also consistent with occupational therapy studies that suggest that sharing knowledge, applying skills, analyzing practice, and understanding the context empower parents and increase their feelings of self-efficacy (Foster et al., 2013). In this study, the increase in parents’ knowledge of autism, anxiety, environments, parent behaviors, and the interrelationship among these factors were reported to enable the parents to change their own behavior and to be more responsive to their child’s behavior.
Maintenance and Generalization of Skills Learned in Groups
The individual follow-up interviews focused on maintenance of skills and knowledge as well as longer term changes. Although some parents admitted to not remembering all of the strategies in detail, all parents noted how the intervention had enhanced the lens through which they view their child and their child’s behavior, noting that they focused more on the trigger or cause rather than the presentation per se. This shift is important given that anxiety, especially in young autistic children, is noted to present behaviorally (Adams et al., 2019) and that few parents and children endorse the physiological symptoms of anxiety, even on the autism-specific measures of anxiety (Adams, Simpson, & Keen, 2020; den Houting et al., 2022). Parents’ recognition of their own role in the maintenance of their child’s anxiety is also important given the high rates of family accommodation of anxiety noted among parents of autistic children (Adams & Emerson, 2020) and the role of such parental accommodation in the success of child-directed therapies for anxiety (Lebowitz et al., 2020).
Parents provided suggestions for improvement, which have been used to refine the intervention and to inform a larger, pilot randomized controlled trial of the intervention (for protocol, see Adams et al., 2021). For example, parents are now given a folder in which to store their information and homework and are specifically asked how they have shared the skills with their partner or other supporters; in addition, the group format has been set to allow some additional practice time between the later sessions. This refinement of content in line with user feedback edges toward participatory research, in which researchers consult with the autism community to gain their feedback on improvements that can be made (Keating, 2021). However, we acknowledge that this participatory research is at the tokenistic stage and that future work should engage with the community before the intervention is developed to enable authentic partnership and codevelopment (Fletcher-Watson et al., 2019).
Limitations and Future Directions
Reporting on parents’ perspectives of autism-specific interventions, and noting their suggestions for improvement, is a critical step toward providing high-quality, tailored, and efficacious interventions across all disciplines. Findings from this study have informed a larger trial that is underway (Adams et al., 2021).
Parents who participated in this study responded to the invitation “helping parents to manage the early signs of anxiety in young children with autism.” As a result, parents of children with varying levels of anxiety participated in the program, which corresponds with other large-scale trials of the standard CLK intervention (e.g., Chatterton et al., 2020). The two children (Child 1 and Child 3) with scores greater than the ASC–ASD cutoff at preintervention showed changes on the ASC–ASD postintervention (see Table 1), whereas the child with a lower ASC–ASD score at baseline had a score that remained stable pre–post intervention. The two children with the largest reductions on the ASC–ASD were ages 5.50 to 7 yr, which was older than Child 2 (age 4 yr). The ASC–ASD was used as a screening measure for anxiety symptomatology, and higher scores on this questionnaire should not be considered equivalent to a diagnosis of an anxiety disorder. The ASC–ASD is an autism-specific anxiety scale designed for children ages 8 to 16 yr, meaning that anxiety behaviors evident in young children (age 4 yr) may not be reported on this measure. All parents qualitatively reported changes in their child’s behavior, which may not have been evident in the screening measure. As noted by Vasa et al. (2020), “Much work still needs to be done to improve the measurement of anxiety in young children on the autism spectrum” (p. 2050).
We acknowledge that this pilot study only reported on a very small number of participants and that the analysis was exploratory, with the absence of a control group limiting findings. The autism-specific measure (ASC–ASD–P) has not been validated for the age of the youngest child in this study (age 4 yr); however, the parents did not report it as unsuitable. Although we reported on children’s level of anxiety in this study, we did not report on other factors that may contribute to outcomes. One such example is the presence of co-occurring conditions. Future research examining the effectiveness of this intervention on reducing or preventing anxiety may benefit from collecting and reporting on additional child demographic information so that these factors can be explored as moderators to intervention effectiveness. We also note that parents were not blind to the aim of this intervention, which may have influenced their responses. However, parents could not see their preintervention ratings when completing their postintervention ratings, limiting the risk of social desirability bias. Finally, the study required parents to be able to attend sessions at the research center during business hours, which may have limited the parents who could commit and attend. Future work should offer intervention sessions across multiple geographical locations and at differing times to support equitable access to the intervention.
Implications for Occupational Therapy Practice
Findings from this study identify factors for occupational therapy practitioners to consider when providing holistic support for autistic children and their families. Occupational therapy practitioners are experts who support a person’s participation and functioning in daily activities. Autistic children are frequently referred to occupational therapy practitioners to support their sensory development process. The research to date suggests a strong interplay between anxiety and sensory overresponsivity (Williams et al., 2021). However, although research often considers these factors as distinct, autistic people often take a holistic perspective considering how these dimensions (i.e., anxiety and sensory differences) affect their daily activities (Sibeoni et al., 2022). Therefore, when autistic children are referred to occupational therapy practitioners for support, the interdependent nature of sensory differences, anxiety, and participation needs to be considered.
The parent–therapist relationship is a key aspect of the occupational therapy practitioner’s role. They support, coach, and train parents in interventions and strategies to support autistic children’s participation and engagement. Findings from this study identify training practices that parents find accessible and useful. In addition, the findings highlight the importance of discussions between parents and therapists to address factors (e.g., anxiety) that may be influencing the presentation of autism characteristics. This approach includes increasing parents’ awareness and recognition of the interplay between sensory differences and anxiety as well as working with parents to identify activities and environments where this interchange may occur.
Conclusion
Occupational therapy practitioners have a unique role in supporting autistic children and their families. Given the interplay between anxiety and autism characteristics, considering these factors when supporting autistic children and their families can contribute to more holistic occupational therapy practices.
Footnotes
Acknowledgments
This study was funded by a Linkage Project grant (LP180100318), awarded to Griffith University and the AEIOU Foundation by the Australian Research Council. We are grateful to the parents who participated in this research study for giving their time to support it.