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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	<li>. <a target="_blank" href="http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=PubMed&cmd=Search&doptcmdl=Citation&defaultField=Title+Word&term=.">.</a> Diagnostic and statistical manual of mental disorders (5th ed). , (2013).</li><li>. <a target="_blank" href="http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=PubMed&cmd=Search&doptcmdl=Citation&defaultField=Title+Word&term=.">.</a> Diagnostic and statistical manual of mental disorders (4th ed). , (2000).</li><li>Beukelman, , Mirenda, <a target="_blank" href="http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=PubMed&cmd=Search&doptcmdl=Citation&defaultField=Title+Word&term=.">.</a> Augmentative and Alternative Communication. 4th Edition. , (2003).</li><li>Cameron, L., Murphy, J. <a target="_blank" href="http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=PubMed&cmd=Search&doptcmdl=Citation&defaultField=Title+Word&term=Obtaining+consent+to+participate+in+research:+The+issues+involved+in+including+people+with+a+range+of+learning+and+communication+disabilities.">Obtaining consent to participate in research: The issues involved in including people with a range of learning and communication disabilities.</a> Br J Learn Disabil. 35 (2), 113-120 (2006).</li><li>Cooper, J. O., Heron, T. E., Heward, W. L. <a target="_blank" href="http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=PubMed&cmd=Search&doptcmdl=Citation&defaultField=Title+Word&term=.">.</a> Applied behavior analysis, 2nd ed. , (2007).</li><li>. <a target="_blank" href="http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=PubMed&cmd=Search&doptcmdl=Citation&defaultField=Title+Word&term=.">.</a> The Belmont report: Ethical principles and guidelines for the protection of human subjects of research. , (1978).</li><li>Dunn-Buron, K., Curtis, M. <a target="_blank" href="http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=PubMed&cmd=Search&doptcmdl=Citation&defaultField=Title+Word&term=.">.</a> The incredible 5-point scale: The significantly improved and expanded second edition. , (2012).</li><li>Gillott, A., Furniss, F., Walter, A. <a target="_blank" href="http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=PubMed&cmd=Search&doptcmdl=Citation&defaultField=Title+Word&term=Anxiety+in+high-functioning+children+with+autism.">Anxiety in high-functioning children with autism.</a> Autism. 5 (3), 277-286 (2001).</li><li>Harwood, V., Preston, J. L., Grela, B., Harold, O., Andrada, K., Landi, N. <a target="_blank" href="http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=PubMed&cmd=Search&doptcmdl=Citation&defaultField=Title+Word&term=Electrophysiological+correlates+of+speech+perception+in+toddlers:+Associations+among+ERPs,+nonword+repetition,+and+language.">Electrophysiological correlates of speech perception in toddlers: Associations among ERPs, nonword repetition, and language.</a> J Speech Lang Hearing Res. , (1995).</li><li>Hodgdon, L. <a target="_blank" href="http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=PubMed&cmd=Search&doptcmdl=Citation&defaultField=Title+Word&term=.">.</a> Visual strategies for improving communication. , (1995).</li><li>Irwin, J., Avery, T., Brancazio, L., Turcios, J., Ryherd, K., Landi, N. <a target="_blank" href="http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=PubMed&cmd=Search&doptcmdl=Citation&defaultField=Title+Word&term=Electrophysiological+Indices+of+Audiovisual+Speech+Perception:+Beyond+the+McGurk+Effect+and+Speech+in+Noise.">Electrophysiological Indices of Audiovisual Speech Perception: Beyond the McGurk Effect and Speech in Noise.</a> Multisens Res. , .</li><li>Irwin, J. R., Tornatore, L. A., Brancazio, L., Whalen, D. H. <a target="_blank" href="http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=PubMed&cmd=Search&doptcmdl=Citation&defaultField=Title+Word&term=Can+children+with+autism+spectrum+disorders+"hear"+a+speaking+face.">Can children with autism spectrum disorders "hear" a speaking face.</a> Child Dev. 82 (5), 1397-1403 (2011).</li><li>Mancil, G. R., Pearl, C. E. <a target="_blank" href="http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=PubMed&cmd=Search&doptcmdl=Citation&defaultField=Title+Word&term=Restricted+Interests+as+Motivators:+Improving+Academic+Engagement+and+Outcomes+of+Children+on+the+Autism+Spectrum.">Restricted Interests as Motivators: Improving Academic Engagement and Outcomes of Children on the Autism Spectrum.</a> TEACHING Exceptional Children Plus. 4 (6), 2-12 (2008).</li><li>McPartland, J., Tillman, R., Yang, D., Bernier, R., Pelphrey, K., Volkmar, F., Rogers, S., Paul, R., Pelphrey, K. <a target="_blank" href="http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=PubMed&cmd=Search&doptcmdl=Citation&defaultField=Title+Word&term=The+social+neuroscience+of+autism+spectrum+disorder.">The social neuroscience of autism spectrum disorder.</a> Handbook of autism and pervasive developmental disorders. 4 (1), 482-496 (2014).</li><li>Myles, B., Trautman, M., Schelvan, R. <a target="_blank" href="http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=PubMed&cmd=Search&doptcmdl=Citation&defaultField=Title+Word&term=.">.</a> The hidden curriculum: Practical solutions for understanding unstated rules in social situations. , (2004).</li><li>. <a target="_blank" href="http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=PubMed&cmd=Search&doptcmdl=Citation&defaultField=Title+Word&term=.">.</a> Findings and conclusions: National standards project, phase 2. , (2015).</li><li>Nind, M. <a target="_blank" href="http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=PubMed&cmd=Search&doptcmdl=Citation&defaultField=Title+Word&term=Conducting+qualitative+research+with+people+with+learning+communication+and+other+disabilities.">Conducting qualitative research with people with learning communication and other disabilities.</a> Methodological challenges. , (2009).</li><li>Premack, D. <a target="_blank" href="http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=PubMed&cmd=Search&doptcmdl=Citation&defaultField=Title+Word&term=Reinforcement+theory.">Reinforcement theory.</a> Nebraska symposium on motivation. 13, 123-180 (1965).</li><li>Scattone, D., Wilczynski, S. M., Edwards, R. P., Rabian, B. <a target="_blank" href="http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=PubMed&cmd=Search&doptcmdl=Citation&defaultField=Title+Word&term=Decreasing+disruptive+behaviors+of+children+with+autism+using+social+stories.">Decreasing disruptive behaviors of children with autism using social stories.</a> J Autism Dev Disord. 3 (26), 535-543 (2002).</li><li>Thiemann, K. S., Goldstein, H. <a target="_blank" href="http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=PubMed&cmd=Search&doptcmdl=Citation&defaultField=Title+Word&term=Social+stories,+written+text+cues,+and+video+feedback;+Effects+on+social+communication+of+children+with+autism.">Social stories, written text cues, and video feedback; Effects on social communication of children with autism.</a> J Appl Behav Anal. 34 (4), 425-446 (2001).</li><li>Watson, D., Clark, L. A., Tellegen, A. <a target="_blank" href="http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=PubMed&cmd=Search&doptcmdl=Citation&defaultField=Title+Word&term=Development+and+validation+of+brief+measures+of+positive+and+negative+affect:+The+PANAS+scales.">Development and validation of brief measures of positive and negative affect: The PANAS scales.</a> J Pers Soc Psychol. 4 (6), 1063-1070 (1988).</li><li>Wong, C., et al. <a target="_blank" href="http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=PubMed&cmd=Search&doptcmdl=Citation&defaultField=Title+Word&term=Evidence-based+practices+for+children,+youth+and+young+adults+with+Autism+Spectrum+Disorders:+a+comprehensive+review.">Evidence-based practices for children, youth and young adults with Autism Spectrum Disorders: a comprehensive review.</a> J Autism Dev Disord. 45 (7), (2013).</li></ol>

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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			<td height="42" style="height:42px;width:216px;">Electroencephalography Net</td>
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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 ...

The overall goal of this familiarization protocol is to increase understanding as well as potentially reduce anxiety for child participants, resulting in a greater likelihood of the successful completion of the research protocol for the collection of EEG data. This method can help support the ethical application of research for all fields of study, especially those that involve vulnerable participants such as individuals with linguistic and cognitive challenges. The main advantage of this technique is the use of evidence-based practices to increase knowledge and understanding of the activities of the research protocol, while ensuring ongoing participant consent.This protocol may extend the capability of other researchers to obtain reliable data from all participants as it provides a model that is easily adapted and replicated for use with different research protocols. Generally, individuals new to this protocol may struggle with lack of familiarity with EBP. However, resources exist to support development and implementation of these techniques.Visual demonstration of the key steps of this method is critical, as singular components, while relatively easy to implement, may be more challenging as part of a collective package. Begin by escorting the participant to the designated play area, containing various toys on the ground. Show the participant the five-point emotion rating scale, and ask them to point to the picture that best represents how they feel.If the participant selects a one or two, proceed by reading and reviewing a social narrative with them. Now we're gonna look over all the games we're gonna play today. Please let me know if you have any questions of anything you might not be sure of, alright?Following the review of the social narrative, assess the participant's emotional state and readiness to continue with the research by showing them the self-rating emotion scale and asking how they feel. At the same time, have the research assistant use a separate scale to rate the participant to ensure that some of the anxiety has been reduced. Next, hand a consent form to the parent and read it with the child participant if they are unable to read the form independently.Ask the participant if they would like to continue and complete the activities described in the social narrative. Then have the participant and parent sign the consent form. After the form is signed, introduce the participant to the visual schedule.These are all the games that we will be playing today. At the end of the game you can take down each card for completing the game. Then point to the take a break card and tell the participant that they may use this card if they need to take a break.Point to the stop card and tell them that they may use this card if they do not want to play any more games for the day. Finally, after the participant has completed half of the assessments, evaluate the participant's emotions using both emotion rating scales and ensure that they maintain a level one or two emotion rating prior to continuing activities. Begin by introducing the participant to a stuffed bear and model the use of the electroencephalography or EEG cap on it.Then read the section in the social narrative that describes use of the cap to the participant. Show the participant how the cap is placed on the bear's head. Allow the participant to touch the cap and interact with it by placing it on the bear's head.Next, apply a modified version of the Premack Principle by saying-Would you like to wear the net hat? If you wear the net hat, then you will get a gift card. If you choose not to, we can do something else.Then use a tape measure to measure the participant's head circumference to determine the cap size. Soak the appropriate cap in the warm electrolyte solution. After this initial measurement, determine the Cz electrode location by measuring from the inion, a location on the back of the skull, to the nasion, a location between the eyebrows above the nose, as well as from the right to left ear.Mark the intersection of these two measurements with a cross using a washable marker. Then place a towel around the participant's neck to prevent water from dripping on their clothing. Tell the participant to close their eyes while the cap is being placed on their head.Carefully line up the vertex electrode on the cap with the intersection mark to ensure that the cap is aligned properly. Once the cap is placed on the head and adjusted, let the participant know that they can open their eyes. After the final activity, assess the participant's emotions one last time to ensure that a one or two emotion level was maintained throughout the protocol, and that wearing the cap did not increase anxiety or decrease the participant's level of comfort.Finally, after the mock EEG experiment is complete, provide the participant with the promised compensation and thank them for their participation. On the next visit, begin by presenting the participant with a social narrative that describes the step of the second appointment. Ask the participant if they are willing to wear the cap in the same manner as the prior visit.Present the participant with a visual schedule that includes all the EEG data collection procedures. Prep the participant for the EEG procedure in the same manner as the familiarization visit. Once the EEG can be seen on a computer screen, ask the participant to blink and move their hands and feet.Then have the child look at the distortion that is created in the EEG when they move. Next, start the stimulus presentation. Ask the child to sit very still like a statue while pointing to the visual sign that shows this behavior.Finally, after completing the EEG portion of the experiment, provide the participant with the promised compensation and thank them for their participation. As part of a series of studies on eye gaze and audio-visual speech perception, an initial cohort of 25 participants with ASD and average IQs was recruited using a similar EEG protocol. 72%of the children in this previous cohort completed the EEG protocol.In the current cohort, thus far, 15 participants with ASD were recruited, 12 of whom participated in the familiarization protocol. Of the 12 that completed the familiarization protocol, 100%completed the full EEG acquisition protocol. While attempting this procedure, it's important to remember to adhere to the protection of participants through the provision of ongoing consent.In addition, each EVP technique contains specific requirements and criteria that must be adhered to to ensure fidelity of development and implementation. Following this procedure, other EBP methods like video modeling can be developed and implemented to support participant engagement. After watching this video, you should have a good understanding of how to implement a familiarization protocol that uses EBP during research activities while adhering to NIH guidelines as well as your specific research protocol.Don't forget that engaging participants in research activities that require adherence to particular behavioral expectations may be challenging for individuals with linguistic and cognitive challenges.

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8.1K vistas.  Southern Connecticut State University. The overall goal of this familiarization protocol is to increase understanding as well as potentially reduce anxiety for child participants, resulting in a greater likelihood of the successful completion of the research protocol for the collection of EEG data. This method can help support the ethical application of research for all fields of study, especially those that involve vulnerable participants such as individuals with linguistic and cognitive challenges. The main advantage of this tec...