Name: a familiarization protocol facilitates the participation of children with asd in electrophysiological research
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Description: Watch this Scientific Journal Video about A Familiarization Protocol Facilitates the Participation of Children with ASD in Electrophysiological Research at JoVE.com

The work was supported by NIH grants R15DC013864 and R21DC011342 (J. Irwin, PI). The parents and individuals that appear in the pictures gave permission for all pictures shown here to be used for publication purposes.

All procedures have been approved by the appropriate research ethics committee at Southern Connecticut State University and Yale University, with consent from participants.
1. Create a Social Narrative
<img alt="Figure 1" class="xfigimg" src="/files/ftp_upload/55941/55941fig1.jpg" /> 
Figure 1. Social Narrative. A sample social narrative, read to the participant prior to the first appointment and by the researcher pr...

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The familiarization protocol outlined above applies EBPs&#160;to increase the likelihood that child participants with ASD will be able to complete multiple testing sessions and EEG data collection. Prior to the implementation of the steps in this familiarization process, participants were unable to complete all components of the EEG research acquisition protocol. Preliminary data from this study show that all participants who engage in the familiarization protocol were able to complete the full EEG data collection.
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Autism spectrum disorders (ASDs) are neurodevelopmental disorders characterized by a constellation of social communicative difficulties and restricted, repetitive patterns of behavior1,2. As the number of identified individuals who meet the criteria for ASD increases, so does the desire to better understand the neurological underpinnings associated with ASD. Experts have suggested that future research should include the development of processes for the early detection of atypical brain function, which may then lead to interventions to support the brain systems hypothesized to impact social behavior14. In particular, this research uses temporally sensitive neuroimaging approaches- namely, electroencephalography (EEG) and Event-Related Potentials (ERPs)- to assess Audio-Visual (AV) speech perception in children with typical development and those at-risk for ASD and other developmental disabilities. The use of electrophysiology techniques, both EEG and ERP, will provide a better understanding of the neural bases for both typical and atypical AV speech perception across development. This research approach includes the analysis of both continuous EEG data and ERPs. Because ERPs are time-locked, multi-trial-averaged portions of the EEG, this paper will discuss procedures for the collection of EEG data.
To ensure that this work is as representative of the population as possible, individuals with ASD who present with varying degrees of social, cognitive, and language ability are included as participants. At present, the systems available for the collection of high-quality EEG data make significant demands on children with developmental disabilities. Examples of behaviors that individuals with ASD may have difficulty with include adapting to novel situations, tolerating uncomfortable sensory stimuli (i.e.&#160;wearing an EEG cap), and sitting quietly. These difficulties may be linked to the individual&#39;s sensory processing challenges, his/her disconnect in social perspective-taking, potential cognitive difficulties, and insistence on sameness. Collectively, these characteristics may impact a child&#39;s ability to comply with the required tasks that comprise the research activity1. Therefore, it is important to develop research protocols that support the children&#39;s strengths and accommodate their limitations to facilitate the participation of children with ASD. The goal is to assist children with ASD in completing research activities, without duress and in a manner that leads to useable neurobiological data.
The current work is part of a larger study on eye gaze and neural response to audiovisual speech in children with language and social disabilities, including children with ASD11,12. The primary experimental protocol involves multiple behavioral assessment sessions, as well as one simulated and one real EEG data collection session. Details of the EEG and ERP processing and analysis will not be discussed here; see Harwood et al.9 for the ERP data processing protocols.
The focus of this paper is a familiarization protocol designed to address the challenges of getting children (particularly those with developmental disabilities such as ASD) to engage in neurobiological research. As in many research studies of this type, participants must complete a variety of standardized assessment tasks in addition to participating in EEG data collection. Due to the challenges that individuals with ASD face when coping with novel environments, tolerating uncomfortable sensory stimuli, and sitting still for extended periods of time, strategies must be developed to increase participant understanding of the research activities. Increased understanding and agency will increase the participant&#39;s ability to successfully complete all research activities. Importantly, this protocol provides multiple opportunities for each participant to make an active decision regarding his/her participation, with a clear ability to opt out and, by monitoring the emotional state throughout the experiment, continuing consent is&#160;ensured4.
The National Professional Development Center on Autism and the National Autism Center are two organizations that have developed clear criteria for the establishment of evidence-based practices for individuals with ASD16,22. The protocol for the current research project used these criteria to identify, select, develop, and implement specific interventions that are applicable to addressing the challenges individuals may face in successfully participating in the research activities. The specific interventions from these sources include social narratives, visual supports in the form of a visual schedule, role-playing, and modeling22. In addition, the protocol includes an application of the Premack principle18. The Premack principle involves following a low-preference activity with a high-preference activity13,18, providing a short, clear connection between the expected behaviors of the individual to the reward. For example, if a child answers questions for 10 min, he/she is then able to play with a preferred toy for 10 min.
Prior research suggests that social narratives are an effective intervention for children with ASD who exhibit disruptive behaviors19. Social narratives provide background and information about the context of a situation as a means of providing increased understanding related to social expectations. Most social narratives include expected activities, possible perspectives of others involved, and ways to interact with other people during structured activities (see Figure 1 for an example of the social narrative used here). Social narratives have been shown to reduce anxiety and support an individual with expectations in the new situation15.
A visual schedule can be effective in helping children with ASD to cope in novel social situations20. Visual supports in the frame of a schedule provide individuals with ASD a static reference to aid in predicting upcoming activities (see Figure 2 for an example of the visual schedule used here). In addition, the removal of activities as they occur supports an understanding of the passage of time and provides a concrete visual representation of the session. Without this visual representation, individuals with ASD may become anxious if they are unable to conceptualize how much time has passed and how much time is left in an activity or session. A visual support that allows the participant to express his or her emotions may also be useful in allowing the participant to more easily cope with different emotions (see Figure 3 for an example of an emotion-rating scale).
Role-playing and modeling provide an opportunity to view and practice new situations for individuals with ASD. The process of rehearsal provides clarity about the expected behaviors and further reduces anxiety for these novel scenarios8,22. Role-playing, including modeling, provides the individual with a clear opportunity to practice and make a decision regarding his/her choice of participating or opting out of a particular activity (see Figures 5 &#38; 6 for examples of role play and modeling with a toy bear and the child wearing the cap).
Some individuals with ASD and/or other developmental disabilities may not have developed the maturity or cognitive capability to clearly understand research tasks. Indeed, there is an ethical dilemma surrounding the participation of vulnerable groups due to their difficulties with comprehension in complex social situations and the impact this has on informed consent17. However, processes have been developed to better ensure informed consent without undue pressure4,17. For example, visual symbols and bullet points with simple explanations are provided here, and participants are asked if they agree to participate in the study as an ongoing process3. To facilitate the understanding of individuals with developmental disabilities, a protocol must be developed that both aligns with study goals yet adheres to ethical guidelines, including the subject choosing to participate without persuasion or undo pressure6.

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a familiarization protocol facilitates the participation of children with asd in electrophysiological research

This paper includes a detailed description of a familiarization protocol, which is used as an integral component of a larger research protocol to collect electroencephalography (EEG) data and Event-Related Potentials (ERPs). At present, the systems available for the collection of high-quality EEG/ERP data make significant demands on children with developmental disabilities, such as those with an Autism Spectrum Disorder (ASD). Children with ASD may have difficulty adapting to novel situations, tolerating uncomfortable sensory stimuli, and sitting quietly. This familiarization protocol uses Evidence-Based Practices (EBPs) to increase research participants&#39; knowledge and understanding of the specific activities and steps of the research protocol. The tools in this familiarization protocol are a social narrative, a visual schedule, the Premack principle, role-playing, and modeling. The goal of this familiarization protocol is to increase understanding and agency and to potentially reduce anxiety for child participants, resulting in a greater likelihood of the successful completion of the research protocol for the collection of EEG/ERP data.

As part of a series of studies on eye gaze and audiovisual speech perception, an initial cohort of 25 participants with ASD and average IQs (n = 25, 19 boys, 6 girls, mean age = 10.25 years) was recruited using a similar EEG protocol (Figure 9). 72% of the children in this previous cohort completed the EEG protocol. In the current cohort, thus far 15 participants with ASD were recruited &#160;(n = 15, 11 boys, 4 girls, mean age = 9.4 years), 12 of whom participated in the...

Watch this Scientific Journal Video about A Familiarization Protocol Facilitates the Participation of Children with ASD in Electrophysiological Research at JoVE.com

A Familiarization Protocol Facilitates the Participation of Children with ASD in Electrophysiological Research

Electrophysiological research is an important tool for identifying biomarkers of developmental disorders, including Autism Spectrum Disorders (ASD), but data collection in these populations remains challenging. This work presents a familiarization protocol to accompany research that includes electroencephalography (EEG) to improve the likelihood of collecting EEG data from children with ASD.

This paper includes a detailed description of a familiarization protocol, which is used as an integral component of a larger research protocol to collect ...

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