**4. Promises and limitations of NDBIs**

Despite cumulative evidence of the effectiveness of EBPs for autistic children suggested by several systematic literature reviews [4, 5], there are a great number of methodological and ethical concerns raised in the more recent meta-analytic review by adopting more sophisticated research methods with respect to the evidence base of EBPs in general (e.g., behavioral interventions) and NDBIs specifically [7, 14, 24]. NDBIs, emerging as valued-based approaches, have begun to address many of these methodological and ethical concerns in the implementation process of interventions and support for autistic children. NDBIs exhibit numerous promises in promoting strengths-based approaches, centering autistic voices, and eventually improving efficacy and effectiveness of interventions and support for autistic individuals in naturalistic settings, and also shed light on the future landscape of culturally adapted and value-based EBPs for helping and supporting autistic individuals to achieve better life outcomes.

#### **4.1 Promises of NDBIs**

NDBIs hold many promises, not just in their encouraging efficacy [7], but also in their philosophical underpinnings. As discussed above, NDBIs excel in their strengths-based approach to teaching children, focusing on what they can do and not what they cannot. Emphasizing child choice over clinician-directed tasks helps boost child motivation, which allows for a more positive, fun intervention environment. By demonstrating to children that effort is more important than perfection, children build confidence to try new things.

The use of naturalistic intervention settings and natural reinforcement also addresses some of the shortcomings of more traditional EBPs. By learning that good things happen during natural interactions, children are able to more easily generalize these skills across environments. For example, a child who learns during an NDBI intervention session that requesting a favorite toy result in getting that toy will find that that same behavior results in the same natural reinforcement at school. Furthermore, there is no need to constantly ensure that providers are all using the same external reinforcers across settings (e.g., making sure that teachers are using the same crackers at school as the interventionist uses at home), since the (natural) reinforcement is built into all learning opportunities. All these above-mentioned attributes of NDBIs attest to its strong embracement of the ecological perspective of child development and its applications in establishing child-centered and home-based interventions since NDBIs are typically implemented in autistic children's natural contexts (e.g., home and community settings) through everyday routine interactions with caregivers. This will likely improve the social and ecological validity of interventions and support for autistic children. In addition, NDBIs hold promises as developmentally appropriate practices which are broadly adopted in early childhood education and service for all children with exceptional learning needs given that the learning targets and objectives of NDBIs are guided by early developmental sequences. NDBIs also have the capability of being highly culturally responsive, as they emphasize setting goals that are important to the family [59, 60] and family professional partnership [61]. This emphasis on family thus should include intervention considerations related to culture. Several studies of culturally adapted NDBIs have shown promise. For example, researchers in China adapted the ESDM curriculum to emphasize vocal tones and include examples of eating relevant to Chinese society (e.g., pictures of chopsticks instead of forks) [62]. In India, Project ImPACT was adapted based on initial parent feedback. Changes included adding more psychoeducation about autism, teaching parents about play, and including extended family members as intervention providers [63]. Additionally, several NDBI manuals have been translated into languages other than English, such as Italian [64] and Chinese [65] versions of the ESDM manual.

Cultural context is also important when considering NDBIs' potential alignment with the neurodiversity approach. Some in the autistic community see themselves as part of an autistic cultural community that is distinct from other groups [66]. Just as NDBIs have the capability to be culturally adapted to fit other ethnic or racial groups, NDBIs have the potential to be culturally adapted to be aligned with autistic culture [52].

In contrast to most of the evidence-based behavioral interventions which predominantly focus on proximal outcomes of behavioral changes and skill acquisition, NDBIs cast emphasis on broader goals and long-term outcomes (e.g., social inclusion, rights, emotional, physical, and material well-being, self-determination, and quality

of life). For example, PRT aims at training autistic children in their pivotal areas of motivation, self-initiation, and self-management that can lead to effective learning of both proximal outcomes such as cognitive, social, and other functional and life skills and distal outcomes like self-determination and quality of life.

#### **4.2 Limitations of NDBIs**

Apart from numerous promises that NDBIs can bring to improve outcomes of interventions and support for autistic children, we also acknowledge some limitations of NDBIs. Similar to those generic methodological issues identified with evidencebased practices in autism interventions above, NDBIs exhibit methodological limitations on the issues such as the quality of the review methods for determining the intervention effectiveness (e.g., primarily synthesizing the effects of the different interventions using a narrative approach and lack of using meta-analytic methods) and the quality of study designs and protocols (e.g., evidence base of NDBIs is primarily backed up by a research literature of plenty of single subject design studies and limited number of RCTs and rigorous group experimental design studies). NDBI RCTs are also hindered by the same methodological issues that autism intervention studies face more generally [24].

Another shortcoming in autism intervention studies is missing conflict of interest (COI) statements [9]. Chief among the potential COI issues are: (1) the author was the intervention model developer; (2) the author is employed to provide the intervention or is affiliated with an institution that provides said intervention; (3) the author receives direct payments for services or items related to the intervention (e.g., training materials, books, providing training); and (4) the study uses a commercially available measure that was developed by the author [9]. Lack of transparency in reporting these conflicts can cast doubt on the validity of the evidence base of the NDBIs interventions. It is important that researchers should adequately report any potential conflicts of interest in the NDBIs intervention studies.

Even more concerning than the methodological shortcomings are the ethical concerns that have been voiced by autistic self-advocates in recent years regarding the implementation of commonly used interventions for autistic children. Three major complaints stand out: the unethical history of behavioral intervention, the focus on normalization of autistic recipients, and the emphasis on compliance. While NDBIs in theory have attempted to address some of these problems, some of these concerns remain relevant to these more naturalistic approaches. More specifically, NDBIs have sought to improve upon the early iterations of behavioral interventions, focusing on reinforcement instead of aversive punishments.

However, goals of intervention, regardless of if it is through the use of NDBIs or more structured, traditional behavioral approaches, are often based on neurotypical standards defined by non-autistic people. This has been linked to autistic masking or camouflaging, the phenomenon that autistic people often feel the need to mask their autism traits in an effort to fit in (see [67, 68]). What is most concerning is that masking has been linked to poor mental health outcomes [69]. Though the implementation of NDBIs is not directly associated with the act of suppressing autistic traits, the common goals of these practices are. For instance, teaching vocal language or social conversational skills based on neurotypical norms are common goals of these interventions. In fact, most NDBI research focuses on improving "social communication" and "language" skills [24], with very few NDBI studies focusing on using alternative communication modalities [70].

The other major ethical concern with NDBIs is the issue of compliance [71]. This goes hand in hand with the focus on normalization, as autistic children are taught compliance around neurotypical behaviors, such as engaging in specific conversational behaviors, or forced eye contact, both of which have been known to be targets of NDBIs. Though there is no doubt that NDBIs seek to provide an increase in autonomy for children participating in the intervention (through the use of child choice/following a child's lead), the use of reinforcement to get children to do certain things or engage in certain behaviors can inadvertently place too much emphasis on compliance, even in these more gentle, naturalistic approaches. As such, NDBI researchers and clinicians need to pay attention to the practical ways in which they are using NDBIs to ensure that the client always maintains their autonomy and that skills being taught are meaningful to the client, so that quality of life and autonomy are prioritized over compliance.

Yet another concern lies with the positionality of the researchers. Historically, it has been neurotypical persons conducting research on interventions and delivering interventions for autistic people, with little involvement from the autistic community. This issue is relevant across all intervention research, including that of NDBIs. The evidence base for all interventions would be significantly strengthened with the increase of autistic researchers involved in these studies, as well as an increase in research and clinical practices that seek autistic feedback on intervention methods and practices to determine which practices are even found to be appropriate and effective by autistic people themselves.

The last concern on NDBIs intervention studies has to do with its historical focus on short-term outcomes, and lack of attention to long-term effects [7]. Though immediate effects of an intervention are of obvious importance, it is concerning that there have not been more longitudinal studies. This concern is of particular importance in light of the voiced concerns from autistic self-advocates that interventions for autistic children have resulted in trauma [72]. Moreover, given that autistic individuals are at a greater risk for mental health issues such as anxiety and depression in adulthood [73], there is a great need to evaluate the long-term effects of these interventions being deemed as "effective" in the short-term to ensure that long-term outcomes are just as positive. On a similar note, an additional concern is that there is a lack of focus on adverse outcomes in the literature on autism interventions [10, 14]. Just because something is found to be effective in terms of identified outcome measures, it does not mean that it is without adverse effects on its participants, and as such it is equally important to specifically evaluate these in all intervention studies.

In addition, it is noted that in systematic reviews and quantitative syntheses, positive outcomes proximal to intervention targets are often reported as evidence of intervention effectiveness for autistic children [24, 74]. Few studies conduct followup measures of child and family outcomes beyond 3–6 months after interventions and support are delivered to autistic children and their families [8]. Long-term outcomes of interventions for autistic adults are even more concerning. Some research results seem to portray a troubling picture on the long-term outcomes of adults with autism suggesting that adults with ASD have rather limited social integration, poor job prospects, and high rates of mental health problems and that overall outcomes for autistic adults in the areas of jobs, relationships, independent living, and mental health are considerably poorer than their same age neuro-typical peers [75]. A recent meta-analysis of studies of quality of life (QOL) for individuals with ASD across the lifespan suggests that autistic adults including those with higher intellectual and verbal functioning have poorer QOL than their peers without ASD [76].

*Naturalistic Developmental Behavioral Interventions as Value-Based and Culturally Adapted… DOI: http://dx.doi.org/10.5772/intechopen.108124*

#### **5. Implications for future research and practice**

Sandbank et al. [7] and Crank [24] both point out that, while NDBIs are a promising intervention type, evidence from randomized controlled trials indicates that the evidence base relies too heavily on parent report, which could inflate effect sizes. This must be addressed in intervention research. However, two important notes must be made: (1) parents may actually be able to detect subtle clinically significant changes in their children that are not picked up on by more standardized measures; and (2) even a "placebo-by-proxy" effect could lead to positive outcomes [77]. For example, parents might be highly encouraged after an NDBI trial because they saw improvements in their child's socio-communicative abilities that they had not witnessed before. Perhaps they then slightly overestimate their child's language improvements on a post-study questionnaire. While it is true that the effect size may be inflated by the parent's self-reported data, it is also possible that this family will continue to implement the intervention because they are so happy with it, which could lead to further language improvements. That said, future research can still do a better job of accurately capturing parent-reported outcomes. For example, qualitative methods such as interviews or free-response questions could be used to corroborate quantitative questionnaire data and explore *why* parents might be overestimating certain things. Furthermore, new questionnaires should be specifically developed to measure parent-reported changes in child behavior, as it is generally not considered psychometrically valid to use instruments in ways in which they were not originally intended and designed [78, 79]. Instead of using instruments designed as clinical diagnostic tools (e.g., the Vineland Adaptive Behavior Scales [80] or the Social Responsiveness Scale [81]), instruments must be specifically designed and validated to measure within-person, longitudinal change in parents' perceptions of their child's abilities.

Though context-bound outcomes can be useful [7, 82], researchers must ensure that they are also including outcome measures that evaluate generalization. For example, many PRT studies rely on parent–child interaction videos to evaluate changes in communication (e.g. [59, 60, 83, 84]). Though parents are not necessarily always instructed to implement PRT (e.g., Hardan et al. say that "parents were instructed to try getting the child to communicate as much as possible" (p. 886)), it is likely that parents knew they were instructed to use PRT, especially since these same videos were used to assess PRT fidelity, and the majority of parents did indeed meet fidelity. While these video clips are important in that they demonstrate that children are responsive to PRT while it is being implemented, it is not clear that improvements in socio-communicative skills would necessarily generalize to other environments where PRT was not being directly implemented, such as at home with their family or at school. Therefore, we suggest that other observational measures be included, such as interactions with adults not involved in or trained in the intervention, interactions with other children such as siblings or classmates, and/or natural interactions at home (e.g., see [85] for a discussion of using 16-h at-home recordings to analyze vocal reciprocity).

In addition to the importance of improving outcome measures of autistic children's generalized gains from interventions and support, there seem pressing needs to incorporate more distal outcomes of autistic individuals such as: changes of autism core characteristics, changes of the implementation process (e.g., person-centered and family centered planning that emphasizes preferences of autistic individuals and their families), and environment (e.g., sustainable family routine), and holistic measures of improved relationship and satisfaction with enhanced well-being (e.g., family and professional partnership and individual and family quality of life) in intervention

effectiveness studies. More research needs to be conducted by including longer follow-up assessments of all above mentioned distal outcomes of autistic individuals and their families. Furthermore, future research ought to examine how different aspects of multicomponent intervention programs like NDBIs affect different types of outcomes. Additionally, adopting recent intervention research models like the Sequential Multiple Assignment Randomized Trial (SMART; [86]) in the future research of NDBIs can help researchers and interventionists not only systematize the application of a personalized approach to NDBIs [87] but also investigate the course of change for adapting the intervention processes to autistic children who are viewed either as a treatment "non-responder" or as "hidden victim" of adverse effects of the intervention [52]. By taking an additional measure to ensure the validity of NDBIs, we can benefit from employing participatory action research in the future research of NDBIs in which autistic individuals and their families are included in the process at all stages of the clinical trial or clinical program development.

#### **5.1 Implications for practice**

First, increased uptake of NDBIs is needed throughout the clinical community. Regrettably, many behavior interventionists have a limited understanding of NDBIs [88], and community implementation is lacking [89]. Further training is thus needed in how to implement NDBIs effectively. Furthermore, it is important for clinicians to understand the need to actively consider cultural adaptations, neurodiversity, and emphasizing strengths when working with autistic children and their families. Crucially, these should not be after-thoughts that are only addressed when NDBIs are implemented outside the United States or when a family points out that something is not in line with their values. Clinicians should bring these topics up from the beginning, regardless of the client's cultural background, in order to establish that these are meaningful aspects of the intervention that are taken seriously by the provider.

Clinicians must also always take autistic perspectives into account. As suggested by Schuck et al. [52], this may mean hiring autistic consultants or behavior analysts, or if that is not possible, staying up to date on what the autistic community is saying via academic literature and social media. This also applies to the perspective of the autistic intervention recipients themselves. If recipients are old enough and can communicate via speaking or writing, interviews or questionnaires can be administered to assess how clients are feeling about the intervention. For younger clients and/or those who use other means of communication, other types of treatment acceptability measures should be used (e.g., assessing child affect [90]).

Furthermore, intervention goals need to be neurodiversity affirming. That is, goals need to be based on autism acceptance and should not encourage children to go against an autistic way of being [52, 91]. Feedback from autistic adults can help clinicians and researchers develop more neurodiversity-friendly goals. For example, pushing children to exclusively use spoken language over other communication alternatives is seen by many to be pushing neurotypical standards on autistic children who have different communication needs (Schuck et al., under review). Additionally, autistic adults view many social intervention goals (e.g., improving communication skills; learning skills of conversation) skeptically (Baiden et al., under review). Relatedly, clinicians must always center autistic clients' strengths. Emphasizing strengths can improve children's self-esteem and confidence, lead to skill generalization, and ultimately lead to improvements in quality of life.

## *Naturalistic Developmental Behavioral Interventions as Value-Based and Culturally Adapted… DOI: http://dx.doi.org/10.5772/intechopen.108124*

Apart from ensuring the appropriate and respectful goals of the interventions, it is crucial for both researchers and clinicians to examine if the implementation of NDBIs is appropriate and respectful and the intensity of NDBIs is appropriate as well. Autistic individuals and their families as well as professionals alike often expect to receive some common intervention recommendations (e.g., intervention variety and intensity). For example, it is noted that intensive behavioral interventions, delivered at 25–40 h per week, are the most frequently recommended intervention for young children with autism. However, Sandbank et al. [9, 14] contend the notion that "greater intervention intensities were associated with greater intervention gains" (p. 341). Research evidence shows that NDBIs, often provided at an intensity ranging typically from 10 to 20 h per week, can help autistic children achieve significant gains in multiple targeted and untargeted areas of interventions.
