Advances in Supporting
           Parents in Interventions for
           Autism Spectrum Disorder
                                   a,                     b                     c
           Jessica Bradshaw, PhD *, Katie Wolfe, PhD , Robert Hock, PhD ,
           Layne Scopanoa
            KEYWORDS
            
 Autism spectrum disorder 
 Intervention 
 Parent-mediated intervention
            
 Parent training 
 Social communication 
 Challenging behavior
            KEY POINTS
            
 Parents and caregivers should be involved in intervention programs for children with
              autism spectrum disorder (ASD) to improve developmental outcomes and reduce care-
              giver stress and strain.
            
 Caregiver-mediatedinterventionsthatusenaturalistic,developmental,andbehavioralap-
              proaches are effective for improving social and communication outcomes in infants and
              children with ASD.
            
 StrategiesforreducingchallengingbehaviorinchildrenwithASDcanbeeffectivelytaught
              to caregivers in clinic-, home-, and community-based settings.
            
 Individualized strategies that support caregivers of children with ASD can reduce burden,
              strain, and stress, resulting in increased caregiver wellbeing and improved child
              outcomes.
           INTRODUCTION
           Recent data suggest that 1 in every 44 children are diagnosed with autism spectrum
           disorder (ASD).1 ASD is a highly heterogeneous neurodevelopmental disorder that
           presents along a spectrum of differences and challenges in social interaction and
           communication accompanied by restricted interests and repetitive behaviors.2
           Research has shown that early intervention is key in improving the lives and well-
                                                                      a
           being of autistic individuals and individuals with ASD. As such, there is an urgent
           needfor the early identification of ASD to accelerate linkage to early intervention ser-
           vices. Routine ASD screenings can take place in pediatrician offices during 18- and
            a University of South Carolina, 1800 Gervais Street, Columbia, SC 29201, USA; b University of
            SouthCarolina, 820 Main Street, Columbia, SC 29208, USA; c University of South Carolina, 1512
            Pendleton Street, Columbia, SC 29208, USA
            * Corresponding author.
            E-mail address: jbradshaw@sc.edu
            Pediatr Clin N Am 69 (2022) 645–656
            https://doi.org/10.1016/j.pcl.2022.04.002                           pediatric.theclinics.com
            0031-3955/22/ª 2022 Elsevier Inc. All rights reserved.
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    646      Bradshaw et al
             24-monthwell-childvisits,followedbyreferralforfurtherevaluationalongwithconcur-
             rent referral to early intervention. Many early interventions include parents and care-
             givers as a key component of implementation to increase the child’s exposure to
             intervention strategies as well as the child’s generalization of skills. Caregiver involve-
             ment in intervention can be considered a caregiver-mediated or caregiver training
             intervention.3 Caregiver-mediated interventions refer to those that focus on teaching
             parents and caregivers how to target core features of ASD, such as social interaction
             and communication skills. In contrast, caregiver training interventions refer to those
             that train caregivers on behavioral techniques for decreasing maladaptive behaviors
                                 3
             for children with ASD. Largely, this research has focused on the feasibility and
             acceptability of teaching treatment strategies to caregivers as well as the effective-
             nessforimprovingchildoutcomes.Thereisanemerginginterestintelehealth models
             for caregiver-implemented interventions as well as caregiver support models for
             removing barriers to treatment implementation. The focus of this clinical review is to
             describe recent advances in (1) caregiver-mediated interventions that aim to improve
             social interaction and communication for children with ASD, (2) caregiver training in-
             terventions for reducing challenging behavior, and (3) specific strategies to support
             caregivers and improve the effectiveness of these interventions.
             Supporting Social Interaction and Communication
             Social interaction and communication challenges comprise a hallmark feature of
                                                                        4
             ASD.TheaverageageofASDdiagnosisisbetween4and5years, yetcommunica-
             tion differences can be observed as early as 9 months in infants later diagnosed with
                 5
             ASD. Some of the first social-communication skills to emerge in infancy include
             shared facial expression and eye gaze, gestures such as showing and giving, and
             directed vocalizations. Following the onset of first words at around 12 months, addi-
             tional social-communication skills include coordinating the use of eye contact, ges-
             tures, and words as well as combining words to form phrases and sentences.
             Followingtheonsetoffluentspeechandcommunication,pragmaticlanguageskills,
             such as conversational turn-taking and context-driven changes in communication
             style become critical.
               Social-communication skills can be supported in infants and children with ASD us-
             ing naturalistic developmental behavioral interventions (NDBIs). NDBIs are a set of
             interventionapproachesthatincorporatethefollowingempiricallybasedcomponents:
             intervention delivery in natural settings within everyday play- or routine-based con-
             texts, use of activities that are child-preferred and motivating, intervention targets
             that are informed by developmental science, and intervention strategies based on
             behavioral principles (eg, antecedent, behavior, consequence).6 Examples of such
                                                   7                           8
             NDBIsincludePivotalResponseTreatment, theEarlyStartDenverModel, EarlySo-
             cial Interaction,9 JASPER,10 and ImPACT.11 Caregiver involvement in NDBIs is com-
             mon practice, but it is especially crucial in the infant and toddler period when play
             and daily routines are frequently mediated through caregivers.
               Asurge of interest in caregiver-mediated interventions has occurred over the past
             decade,andarecentsystematicreviewidentified54studiesoffamily-mediatedinter-
             ventions that focus on social interaction and communication.12 The primary goals of
             these studies were to teach caregivers to implement the intervention with fidelity (ie,
             deliver the intervention accurately as it was intended) and to improve child skills. To
             accomplishthis,caregiversmeetwithatrainedtherapistwhoteachestheintervention
             using live modeling, video modeling, role play, and practice with feedback. For
             example, Project ImPACT11 is a 24-session manualized caregiver-mediated interven-
             tion that targets 4 core social-communication skills: social engagement, language,
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                                                   Supporting Parents in Interventions for ASD      647
          imitation, and play. During each session, a trained therapist meets with the parent and
          child to discuss the topic of the day, model intervention strategies with the child,
          observetheparentpracticethestrategieswiththechild,andprovideinvivofeedback
          on intervention implementation. The therapist then provides homework assignments
          to practice the strategies during daily routines at home. Preliminary results suggest
          that Project ImPACT significantly increases parent adherence to treatment, improves
          child social and communication skills, and decreases parent stress and depression.13
          Asanotherexample,theparent-mediatedJASPERmodel,isan8to10-weekprogram
          that teaches parents strategies for improving the frequency of social communication
          and play acts.14 Through didactic instruction, therapist modeling, and practice-with-
          feedback, parents are taught to identify the current play and communication level of
          their child, follow their child’s interests, and insert opportunities for the child to initiate
          joint attention and engage in joint play routines. Results across multiple studies
          demonstrate effectiveness in improving joint engagement with a caregiver, respon-
          siveness to joint attention, and diversity of play skills.14,15 Overall, studies on family-
          mediated interventions for improving social interaction and communication suggest
          that these teaching strategies are generally effective in improving caregivers’ skills
          in intervention implementation, resulting in improvements in a variety of child social
          behaviors, including social engagement, communication skills, and reciprocal social
          interactions.12 Somestudiesalsoreportimprovementsinparentstress,mentalhealth,
          and   parenting   confidence   following   parent-mediated    social-communication
          interventions.16,17
            Whileintervention programsaretailoredtotheindividualskills andmotivatingactiv-
          ities of each unique child, very little research has been conducted to individualize
          caregiver-mediated approaches within the unique needs of the caregiver and family
          context. A recent study showedthatparentswithhighlevelsofstressbeforeinterven-
          tion have better outcomes with a lower-intensity intervention, whereas parents with
          lower stress benefited more from a higher intensity intervention.18 Parent stress, so-
          cioeconomic strain, and autistic traits have also been associated with child out-
                 19
          comes.    In general, parents of children with ASD experience heightened levels of
          stress and mental health challenges20 and caregiver-implemented interventions result
          in small, but significant improvements in parenting confidence and, to a lesser degree,
          mental health.17 Continuing this emerging line of work will be essential in developing
          effective and highly tailored coaching strategies.
            Telehealth models of caregiver-mediated interventions for social communication
          arealsoofparticularinteresttoincreaseaccessforruralandlower-resourcedfamilies.
          Synchronous, asynchronous, and hybrid models of remote social-communication
          NDBIshavebeenexplored,demonstratingthefeasibilityandpreliminaryeffectiveness
          for  teaching caregivers intervention strategies and improving child social-
          communication skills, including language, eye contact, and social engagement.21,22
          Some research suggests that telehealth approaches and in-person models result in
          similar outcomes,12 while other studies suggest that in-person models are more
          beneficial.21
          Interventions for Reducing Challenging Behavior
          Challenging behaviors, although not included in the diagnostic criteria for ASD, are
                                                    23
          common in children and youth with ASD.       Current prevalence estimates suggest
          that 56% to 94% of children with ASD engage in one or more challenging behav-
              23,24
          iors,    including aggression, tantrums, self-injury, and property destruction. Chal-
          lenging behavior can adversely impact the individual’s quality of life as well as that
          of their family, limit access to typical educational and community settings, and
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     648     Bradshaw et al
             increase parental stress. Thus, challenging behavior is a critical treatment target for
             many individuals with ASD and an area in which caregivers may need significant
             support.
                Researchers have identified numerous empirically supported interventions to
             address challenging behavior that is rooted in the field of applied behavior analysis
             (ABA)25 and an understanding of how events in the environment affect behavior. Spe-
             cifically, effective intervention begins with identifying the function of challenging
             behavior, or the conditions under which it is likely to occur. Then, a function-based
             intervention can be developed with strategies that address the purpose of the
             behavior.26 Central to this approach is an emphasis on teaching and reinforcing
             appropriate behaviors to build adaptive skills and to prevent challenging behavior
             from reoccurring in the future.27
                Ample research supports the effectiveness of teaching caregivers of children with
             ASDtoimplementinterventions for challenging behavior28,29 and suggests that prac-
             tice andfeedbackareintegralaspectsofeffectivetrainingbecausetheyimprovecare-
             givers’ implementation fidelity.30 Unfortunately, the inclusion of practice and feedback
             in such training can be resource-intensive. Further, therapists who deliver effective
             caregiver training need specialized knowledge not only about ABA, ASD, and chal-
                                                                                           29
             lenging behavior but also about family-centered practice and caregiver coaching.
             Taken together, these factors can result in reduced access to high-quality caregiver
             training that maximizes both child and family outcomes.
                Recently developed intervention models, including Research Units in Behavioral
             Intervention (RUBI),31 Prevent-Teach-Reinforce for Families (PTR),32 and An Individu-
                                                                 33
             alized Mental Health Intervention for ASD (AIM HI),    focus on scaling up and
             increasing caregiver access to high-quality training on empirically supported interven-
             tions for challenging behavior. Critically, each model includes key ingredients of effec-
             tive training (ie, caregiver practice and feedback). In addition, each model is
             manualized and thus can be implemented with consistency by therapists without
             extensive training in ABA or ASD and who practice in existing service systems such
             as early intervention and community mental health.
                RUBIisamanualized,16-weekcaregivertraining program for challenging behavior
             that has been implemented in both individual31 and group formats.34 RUBI includes
             instruction, discussion, modeling, and role play with feedback; caregivers are
             assignedhomeworktocompletebetweensessions.Homevisitsandboostersessions
             may also be included in the program. Researchers have found that RUBI produces
             larger decreases in parent-rated child challenging behavior than parent education
                                                       3
             whenimplemented individually with families, and that RUBI can be effectively deliv-
             ered via telehealth to further increase access.35 Preliminary research also suggests
                                                                             34
             that RUBI is feasible for group delivery in a community-based clinic.
                PTR is an intervention model for persistent challenging behavior that incorporates
             empirically supported strategies and is based on positive behavior support.27 Positive
             behavior support is an approach to addressing problem behaviors that focuses on
             improving the target individual’s quality of life by increasing their functional and social
             skills through evidence-based interventions that fit within the natural environment.36
             Originally developed for school systems, PTR has been adapted29,37 and manualized
             for use with families.32,38 PTR involves a facilitator collaborating with the caregiver to
             identify the function of specific challenging behavior and develop an individualized
             function-based intervention that is tailored to the caregiver’s preferences, values,
             andcontext. The facilitator teaches the caregiver to implement the intervention using
             modeling, coaching, and feedback. Researchers have served as facilitators in most
             studiesofPTRwithfamilies;however,inanotableexception,Rivardandcolleagues39
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                  Security de ClinicalKey.es por Elsevier en agosto 19, 2022. Para uso personal exclusivamente. No se 
                  permiten otros usos sin autorización. Copyright ©2022. Elsevier Inc. Todos los derechos reservados.