Sexuality and Disability

, Volume 30, Issue 3, pp 319–336

Generalized Effects of Social Stories with Task Analysis for Teaching Menstrual Care to Three Young Girls with Autism

Authors

  • Lesley S. Klett
    • San Diego State University
    • San Diego State University
Original Paper

DOI: 10.1007/s11195-011-9244-2

Cite this article as:
Klett, L.S. & Turan, Y. Sex Disabil (2012) 30: 319. doi:10.1007/s11195-011-9244-2

Abstract

Individuals with autism spectrum disorder (ASD) have distinctive needs with respect to sexual development and education. This pilot study evaluates the effectiveness of a parent-implemented Social Story intervention with an embedded visual task analysis to teach menstrual care skills to three young girls with ASD. Skill generalization was evaluated using two different types of pads and a simulated condition (i.e., a pad with red syrup). Social validity of target behaviors, intervention procedures and intervention effects were evaluated. Additionally, qualitative changes in participant behaviors were measured via phone interviews with the participants’ mothers (Bruess and Greenberg 1994) 1 year later. Results indicate that participants were more knowledgeable about reproductive development and were able to independently care for their menses regardless of pad type (wings vs. no-wings) and condition (clean vs. dirty). Parents reported high satisfaction with the intervention procedures and outcomes. Implications of the study and future research are discussed.

Keywords

Social storiesAutism spectrum disordersDisabilitySexual educationMenstrual careUSA

Introduction

Sexuality is a normal and healthy part of life [1], and includes a broad range of physical, emotional, and social behaviors [2]. The National Commission on Adolescent Sexual Health (1995, p. 2) defines sexuality as “the sexual knowledge, beliefs, attitudes, values, and behaviors of individuals” and recognizes the importance of sexual expression regardless of ability. Experts emphasize that individuals with disabilities [3], including those with autism spectrum disorders (ASD) [4], should learn to care for their own bodies, establish and maintain intimacy and relationships, and engage in sexual behaviors.

A neurological developmental disorder, ASD causes a broad range of difficulties in verbal and non-verbal language and social behavior [5]. For individuals with ASD, expression of sexuality is particularly challenging given the social and behavioral aspects of the condition [4]. While children typically discover their sexuality through casual social encounters [6], individuals with ASD often have difficulties in unstructured social situations, making it more challenging for them to learn about relationships, marriage, and parenthood skills in a natural, organic progression [4]. Unfortunately, the social difficulties common to individuals with ASD also increase their vulnerability to sexual abuse [7]. Finally, and importantly, individuals with ASD might need additional support and assistance to develop the requisite skills to maintain good reproductive hygiene and health [4]. Thus, individuals with ASD have distinctive needs with respect to sexual development and sexuality education making it imperative that a sexual education program for those with ASD be individualized to address this population’s specific needs.

Sexual Education and Individuals with ASD

Despite the importance of sexual education for individuals with ASD, this area of research has received very little attention [811]. The research that does exist has primarily focused on masturbation and inappropriate behaviors associated with masturbation [8, 12, 13]. Although maturation and menstruation is usually a defining experience for a young woman, including those with ASD, the majority of research pertaining to menstrual care is specific to individuals with intellectual disabilities [1417].

Despite scant research regarding the sexual education of individuals with ASD, several sexual education protocols and curricula have been proposed. For example, the TEACCH program is a comprehensive public program for children with ASD in North Carolina. In addition to covering all areas of function, such as academics and social skills for children with ASD, the TEACCH curriculum offers a sexual education component that is divided into four developmentally sequenced levels [18]. The first level consists of teaching appropriate behaviors and habits. The second and third levels focus on skills related to personal hygiene and understanding sexual anatomy and functioning. The fourth level is designed for individuals with higher social functioning and addresses a variety of social relationships.

Another program developed by The Devereux Foundation, a nonprofit behavioral health organization, specializes in supporting the unique needs of individuals with ASD. The sexual education curriculum promotes a variety of skills in a comprehensive fashion, beginning with describing body parts and functions, social/sexual behavior, the sexual life-cycle, dating, marriage, parenting, establishing relationships, abuse awareness, boundary issues, assertiveness, and self-esteem [12]. This program has a strong parental component that involves parents as much as possible in training their own children [12].

In summary, children with ASD have unique characteristics, and their need for appropriate sexual education is well documented. However, only a few curricula and guidelines have been designed to address their needs regarding sexuality, and the research evaluating effectiveness of sexual education programs for individuals with ASD has been limited to a focus on inappropriate behaviors associated with masturbation. Given that puberty and menstruation is a critical developmental milestone for any young woman, further research is needed to evaluate the effectiveness of interventions to prepare those with ASD for the changes during puberty and to promote their independence related to menstrual care. One emerging intervention method for individuals with ASD is “Social Stories”.

Social Stories

The goal of Social Stories is to share accurate social information that is easily understood by its audience, promoting an improved understanding of events and expectations leading to more effective responses [19]. Social Stories are written specifically to “describe a situation, skill, or concept in terms of relevant social cues, perspectives, and common responses” [20]. Researchers have used Social Stories among individuals with disabilities to reduce problem behaviors [2123], acquiring knowledge about social situations [24], learning new skills [25, 26] and identifying emotions [27].

While the emerging literature regarding SS is promising, more evidence is clearly needed to establish its effectiveness as a viable intervention approach for individuals with disabilities as well as those with ASD [28, 29]. Nichols et al. [28] reviewed 10 studies published through 2004 utilizing a single-case research design and found that SS were more effective for children with autism than children with Asperger syndrome. However, they expressed methodological concerns regarding these studies and suggested that SS be used only with ongoing individual monitoring to evaluate effectiveness.

More recently, Test et al. [29] conducted a meta-analysis for 28 studies published between 1995 and 2007 and found that many of these studies had methodological issues. These issues included but were not limited to: (1) the use of research designs that prohibited determining functional relation, (2) absence of social validity measures that provide input from consumers of interventions (e.g., parents, and teachers), and (3) lack of maintenance and generalization data to inform researchers about potential long-term effects.

In conclusion, SS is an emerging intervention approach for individuals with ASD to facilitate teaching new appropriate skills and decreasing problem behaviors. However, little evidence for its effectiveness can be found in the literature. One of the important but neglected research areas for individuals with ASD is teaching skills related to puberty and menstrual care. Two key factors may make SS an optimal option for the sexual education of individuals with ASD. First, the sexual education of individuals with disabilities is typically delegated to parents [30]. While parents are uniquely qualified to address the special needs of their children in this area, they often do not fulfill this role and delay it until the high school years [31]. This might be due to discomfort addressing various aspects of their child’s sexuality [3], or a lack of information and skills to select the most appropriate way to present the information [32]. Social Stories is a very simple and precise approach to present information across a wide variety of topics, and may be a helpful tool for parents facing the challenges of sexual education. Second, SS can create a context for sexual education allowing those with disabilities to gain knowledge about various reproductive hygiene topics while simultaneously acquiring the necessary skills for expressing their sexuality or taking care of their own bodies.

The purpose of this pilot study is to evaluate the effectiveness of a parent-implemented SS intervention with an embedded visual task analysis to teach menstrual care skills to three young girls with ASD. Social validity measures were also collected via parent survey to evaluate the perceived importance of target behaviors, appropriateness of intervention procedures, and overall parent satisfaction. Skill generalization was evaluated using two different types of pads and a simulated condition (i.e., a pad with red syrup). Finally, qualitative changes of participant behaviors were evaluated via phone interviews with two of the participant’s mothers 1 year after the intervention was completed.

Methods

Participants

Three adolescent females with a diagnosis of autism participated in the study. The participants were recruited from a local Southern California Parent Group based on the following criteria: (a) gender, (b) onset of menstruation had not yet occurred; (c) parents reported that menstrual self-care had not been taught; (d) parents viewed the acquisition of menstrual-hygiene skills as important; and (e) female parent was willing to collect data and implement the intervention.

All of the participants lived with their parents in an upper middle-class neighborhood. They were Caucasian and the primary language spoken at home was English. They could independently follow a typical bathroom routine and received moderate or high scores in adaptive living skills on the Vineland Adaptive Behavior Scales [33].

Haley was 12 years old at the initiation of the study. She is enrolled in a public elementary school and receives support services in the areas of speech and language, occupational therapy, reading and math. Her assessment team’s report revealed that her reading comprehension scores reflect grade level 2 with strength in decoding skills. She is able to express her basic needs and answer who, what, where questions using words and phrases. Both of her parents had earned bachelor’s degrees, and she has two siblings.

Natalie was 11 years old at the initiation of the study. She was enrolled in public elementary school and reads at a 4th grade reading level, with receptive and expressive vocabularies within typical limits for her age according to her parents’ reports. She is able to maintain appropriate communication exchanges, respond to open-ended and yes/no questions. Both of her parents had earned bachelor’s degrees. She does not have any siblings.

Susan was 9 years old at the initiation of the study. She attends a private school for individuals with disabilities and receives speech, language and occupational services. She reads at a 2nd grade reading level and her receptive and expressive vocabularies are within typical limits for her age according to educational team reports. Susan has moderate conversational skills as evidenced by inappropriate topic changes but is able to initiate conversations and respond to who/what/where and yes/no questions appropriately. Her mother had earned a bachelor’s degree and her father a master’s degree. She does not have any siblings.

Setting

The data collection and intervention sessions were conducted by their mothers in each participant’s home. Participants and their mothers were only ones present during the data collection and intervention sessions. The investigator participated in 20% of the observation sessions to assist mothers and answer their questions but was not in the bathroom during observations due to Institutional Human Subject Review Requirements. The size of the bathroom for each participant was approximately 5 × 8 feet and included a bathtub and shower combination, a sink, a mirror, a toilet and a trash receptacle next to the toilet.

Target Behaviors

The primary target behavior was independent completion of a typical bathroom routine for changing a sanitary pad and included eleven steps: (a) grasp “dirty” pad, (b) remove “dirty pad”, (c) fold in half and wrap “dirty pad”, (d) place pad in trash receptacle, (e) pick up clean pad, (f) take pad out of package, (g) grasp strip on back of pad, (h) remove strip, (i) place clean pad on underpants, (j) pull up underpants, (k) wash hands [34, 35]. In addition, concepts related to puberty and menstrual knowledge were evaluated pre- and post-intervention (Table 1).
Table 1

Menstrual checklist

1. I will get my period every month and blood will come between my legs from my vagina. This is okay

2. It will be okay when the blood comes because I am a big girl now. The blood will not hurt me. I will become a woman, like mom

3. The blood is called my period. The blood can make a mess. I need to wear pads in my panties when the blood comes

4. When a girl is menstruating, she should change her pad every 2 h

5. A girl can ask her mom or her teacher for a pad if she does not have one

6. A girl should wash her hands after changing her menstrual pad

7. A used menstrual pad should be flushed down the toilet

8. I will wear a pad when the blood comes

9. A period comes every month for a few days and then it will stop

Data Collection and Measures

Observational Data

To collect data on the sanitary pad change, a task analysis that included the 11 steps described previously was utilized. The first author trained mothers on how to collect data using a task analysis. The training took place at the participant’s home and lasted approximately 30 min. The content of training included the purpose of task analysis, scoring of the data sheets, and importance of eliminating assistance and praise for correct responses during observation sessions. The training session for each participant began with introducing the written task analysis for sanitary pad change. Then, the investigator modeled each step of the task analysis for mothers to ensure assess their understanding and ensure consistent replication of the intervention. Furthermore, the investigator reviewed a “hand-washing” task analysis with mothers, and requested that they take data while the investigator was washing her hands. During this process, the investigator purposefully performed some steps of the hand-washing sequence incorrectly to ensure parents were able to distinguish correct and incorrect responses. The practice continued until mothers collected data with 100% accuracy for the hand-washing task analysis.

Following training, mothers utilized data collection procedures to evaluate participant response. Data collection schedules varied based on the mothers’ and participants’ preference and availability, but they typically occurred in the mornings after breakfast or prior to bedtime during baseline and intervention phases. These sessions lasted approximately 2 min and were conducted on average every other day during both phases. Data were collected for each step of the task analysis using a multiple opportunity assessment procedure [36]. The task analysis included the eleven menstrual pad change steps described. The participant and the mother walked to the bathroom where the mother placed a sanitary pad on the participant’s underwear and gave the verbal instruction, “change your pad”. The participant was observed attending to her menstrual hygiene skills. The caregiver did not provide any instruction. Correctly performed steps were recorded with a plus (+). If the participant failed to perform a task analysis step after a 5-s latency or otherwise made an error, performance on that step was scored with a minus (−), then the caregiver completed that step until all remaining steps had been observed and scored. No praise or feedback was given for task performance, though each participant was praised for attending.

Menstruation Checklist

A menstruation knowledge checklist was developed and utilized during pre- and post-intervention to assess participants’ understanding of concepts related to menstruation and puberty in general (Table 1). During the assessment, the participants are read 9 true and false statements by the investigator and asked to respond to these questions using Yes or No. Correct answers are marked with a plus, incorrect answers area recorded with a minus.

Comprehension Questions

The investigators developed a second questionnaire to be used by mothers during SS reading (Table 2). This questionnaire was designed to check and monitor the participants’ understanding of the story, increase their awareness and understanding of the concepts related to puberty and menstruation, and standardize the implementation of SS reading among participants (see intervention procedures). Importantly, the investigators rephrased the comprehension questions (e.g., who, what questions) in the menstruation checklist in order to further validate whether participants had developed an understanding of some basic concepts related to menstruation and puberty in general. Correct responses were recorded with (+) and incorrect responses were marked with (−).
Table 2

Comprehension questions

1. Do all little girls become teenagers?

2. Will your body get hairier? Will your breasts grow?

3. Who will help you if you have questions about growing up?

4. Who will you grow to look like?

5. Will you be sick or hurt when blood comes from your vagina?

6. What is the blood from your vagina called?

7. How long will the blood from your vagina come out ?

8. During your period, will you try your best to keep your body clean?

9. During your period, what will you wear on your underwear to help keep you clean?

10. Do you need to pull off the sticky strip of the pad?

11. How often do you need to change your pad when you have your period?

12. When you change your pad during your period will you try your best not to touch the blood on the pad?

13. What do you wrap the dirty pad in before you throw it in the trash can?

14. Do you need to put a clean pad in your underwear after you take the dirty one off?

15. Do pads help your body and pants stay clean?

16. What is the last step in changing your pad?

17. Will you do a good job of wearing pads in your underwear when you have your period?

18. Do you need to wear a pad when you don’t have your period?

19. Where will you keep a pad when you are at school?

20. Who will be proud of you?

Inter-observer reliability data on the sanitary pad change could not be gathered due to the nature of the behavior and the requirements of the University Institutional Review Board. However, two different observers reviewed the scored task analysis data sheets, menstruation knowledge checklists and SS questionnaires to gauge inter-rater reliability.

Post-Intervention Parent Satisfaction Measure

To evaluate the social validity of the intervention process, a 9-item Likert scale caregiver satisfaction survey was administered following the intervention (Table 3). The caregivers were asked to rate how satisfied they were with their daughter’s performance and asked to evaluate their satisfaction with intervention procedures.
Table 3

Post training parent satisfaction measure

My child independently uses the bathroom

My child needs to be told what to do for changing a sanitary pad

My child has made improvements in handling menstruation after social story intervention

I am satisfied with my child’s current menstrual hygiene skills

I believe my child will be able to independently care for her menstruation in the future

I enjoyed using the Social Story as an intervention

I believe the Social Story helped my daughter gain knowledge and skills regarding menstruation

I would continue to use the Social Story when my daughter has her menses

One Year Follow-Up

To evaluate the degree to which menstrual hygiene procedures were consistently practiced, participants’ mothers were contacted 1 year after the completion of the study. Only two parents responded. A 20-min phone interview was conducted with each parent who responded and a semi-structured format was utilized. The following questions guided the interview: (a) How is your daughter doing? (b) Did her menses begin yet and if so, when? (c)How did she react when she had it? (d) How is she doing with her menstrual care? (e) How long did you continue reading the SS after the study ended? Is there any interesting story or outcome that you would like to share about your daughter related to her understanding of growing up, puberty, menstruation and care or things that they read in her social story? (f) Tell us if any of your behaviors and interaction with your daughter that impacted or changed as a result of the intervention, and (g) Please tell us things that we could change or do differently to improve the SS intervention.

Experimental Design

To evaluate the effects of the SS regarding menstrual care, a multiple baseline design was replicated across three participants. Baseline data were collected for each participant simultaneously. The intervention was then introduced to the first participant while the baseline phase continued for participants 2 and 3. When an increasing trend was observed in the data for the first participant, the intervention began with the second participant while the third participant remained in baseline. When an increasing trend was observed for target behavior with the second participant, the intervention began with the third participant and the baseline phase ceased. The benefit of non-concurrent implementation of the intervention is that the investigator can demonstrate the effect of an intervention by showing that behavior changes when and only when the intervention is applied, thereby helping eliminate threats to internal validity [37].

Baseline

Baseline data were collected on each participant’s behavior until stable. Baseline sessions were approximately 2 min long and typically occurred either in the mornings before school or prior to bed time. Data were collected on each step of the task analysis using a multiple opportunity assessment procedure as described previously. After the intervention began, probe sessions were conducted every other day using baseline procedures. Mothers established a routine at home and conducted the probe sessions following the social story time.

Intervention

Social Story Development

The investigators used excerpts from Taking Care of Myself [35] in creating a general SS regarding puberty and menstruation. In addition, recommended sentence ratio types were utilized in developing the SS, which included two to five descriptive, perspective, and/or affirmative sentences for each directive or control sentence [38]. Examples of different types of sentences included: (a) Descriptive, statements describing facts that are free from opinion or assumption, “My name is _____”, or “I was born a baby girl”; (b) Perspective, statements describing personal knowledge, thoughts, feelings, and beliefs, “I will be okay when I get my period and the blood comes”, or “When I get my period and take care of myself, Mom will be proud of me”; (c) Affirmative, statements enhancing the meaning of surrounding sentences, “This is okay”, or “This is very important”; and (d) Directive, statements suggesting a response to a situation or concept, “During my period, I will wear pads in my panties. Next, I will pull off the sticky strip of the pad and put the clean pad into my underwear”.

Furthermore, the SS is divided into three main sections and each section is named with a concise title [39]. Growing Up, My Period, and How to Take Care of My Period (Table 4). The Growing Up section introduces the topic and includes explanation of general puberty changes for adolescent females. The My Period section includes an explanation of menstruation. Finally, the How to Take Care of My Period section includes an explanation of steps and behaviors expected of the participant to independently care for her menstrual needs and ends with a conclusion sentence.
Table 4

Sample social story

(1) Growing up

My name is ___. I was born a baby girl. I grew into a little girl and now I becoming a big girl. All little girls become big girls. Big girls become teenagers and teenagers become young women. My body is changing. My body is growing bigger and taller. Hair will grow on my legs, underarms and my vagina. Soon, breasts will grow on my chest and I will need to wear a bra. This is okay. I am growing up! My skin is changing too. I need to wash my face to help it stay clean. This is okay. All girls go through these changes when they grow up. If I have questions about growing up I can ask mom. I will grow to look like mom, ____, ____ and ____. Soon I will have my period just like mom, ____, ____ and _____

(2) My period

When I have my period, blood will come from my vagina. At first I might be worried when blood comes from my vagina. But I will not be hurt or sick when the blood comes from my vagina. I am okay because I am becoming a woman, like mom. The blood that comes from my vagina is called my period. All big girls, moms, and adult women have periods. A period usually happens every month. Blood will come out of my vagina for 5 or 6 days, and then the blood will stop. A period is messy. Blood might get on my underwear and pants. Wearing pads in my panties will help keep me clean. During my period, I will wear pads in my panties and blood from my privates will go on the pads

(3) How to take care of my period

When I have my period I will wear a pad to keep clean. First I find a clean pad in the bathroom and I will take the pad out of the package. Pads help me with my period. Next, I will pull off the sticky strip of the pad and put the clean pad into my underwear. I will press down on the pad to make sure it sticks. This will help me stay clean like all big girls. When I have my period, the blood from my vagina will go on the pad. When girls have their periods they usually change their pads every 2 h. I will need to change my pad every 2 h so my underwear and pants stay clean. When I change my pad it means I take off the dirty pad and put on a clean pad. When I take off the dirty pad I will grab the top end of the pad that does not have blood on it and I will pull up. I will take the pad off of my underwear and try my best not to touch the blood so I stay clean. Next, I will fold the dirty pad in half and wrap the dirty pad with toilet paper. I will throw the pad in the trashcan. I will do my best to make sure I put the dirty wrapped pad in the trashcan. When I do this I make sure that the bathroom and I stay clean

Then I will find a clean pad in the bathroom and I will take the pad out of the package. Next, I will pull off the sticky strip of the pad and put the clean pad into my underwear. I will press down on the pad to make sure it sticks. This will help me stay clean like all big girls. Last, I will wash my hands with soap and water. I will be okay when I get my period and the blood comes. I will do a good job of wearing pads in my panties when the blood comes so I stay clean. When I have my period I will need to keep a pad with me in my bag at school and when I am at a friend’s house. If I do not have a pad with me I can ask mom or a teacher for a pad.

When I get my period and take care of myself Mom will be proud of me! I will be proud of myself! Becoming a woman like mom, ____, _____, and ____ is exciting! Yay! Growing up is awesome!

The first author individually met with each mother to revise the original SS for clarity and appropriateness for the family’s cultural values and preferences. For example, potentially sensitive words and phrases were removed or replaced with more appropriate ones based on parents’ preferences. In some cases, additional statements were added. For example, one mother felt it was very important for her daughter to use deodorant following the bathroom routine and this step was added for her daughter’s social story. Visual cues in the form of photographs, commercially available diagrams and drawings were also included to improve understanding. Social stories were further individualized by adding the participant’s and her mother’s photo. The final product was written in 18+ Cambria font, ranged in length from 18 to 22 pages, each page contained no more than 5 sentences with a corresponding question at the end of the page, and displayed in clear binder sleeves in a pink 3-ring binder.

Implementation of Sessions

Prior to the intervention session, the first author met once with each parent to describe how to conduct the intervention session. This meeting took a maximum of 15 min and was used to answer parents’ questions and describe how to utilize the social stories. To keep the procedures simple for the parents, the intervention procedures included the following key components that were emphasized during the meeting: (a) parents read each page out load and with enthusiasm to keep participants’ interest, (b) take turns in reading the stories as long as their daughter shows interest, (c) ask the corresponding question located at the end of each page and record the participant’s answer on the given data sheet, and (d) provide the correct answer for incorrect responses and move on to the next section. The intervention sessions took place once per day and lasted approximately 5 min. The specific time of the session varied for each participant based on family routine and activities but typically occurred following a breakfast routine in the mornings or prior to bedtime in the evenings. During the intervention sessions, participants and their mothers took turns reading pages of the SS out loud, with the exception of Natalie, who requested that her mother read the SS each time.

Generalization

Generalization data were collected by varying the type of pad (wings vs. no wings) every other assessment session during both baseline and intervention phases. Generalization was also evaluated during probe sessions by introducing simulation sessions. In these sessions, the mothers placed the pad with red syrup on the participant’s underwear prior to the task direction, “change your pad”. The simulated sessions were introduced for each participant after the third or fourth probe sessions.

Results

Menstrual Care and Knowledge

Figure 1 displays the participants’ independent completion of menstrual care routines during the baseline, intervention, and simulation phases. Correct responses for Haley averaged 31% of the task analysis steps (range 18–36%) during baseline and immediately increased to 73% (range 64–82%), 86.5% (range 73–91%) and 98% (range 91–100%) during intervention, simulation and in vivo sessions, respectively. Natalie’s mean percentage of correct responses was 38% with a range of 18 and 55% during baseline, it increased to 48% (range 45–64%) and 66% (range 36–82%) for the intervention and simulation phases, respectively. Susan’s baseline percentage of correct responses averaged 66% (range 27–91%) and following the intervention, it increased to 86% (range 82–100%) during the intervention phase and maintained a mean of 92% (range 73–100%) during the simulation phase.
https://static-content.springer.com/image/art%3A10.1007%2Fs11195-011-9244-2/MediaObjects/11195_2011_9244_Fig1_HTML.gif
Fig. 1

Participants’ performance of menstrual care during baseline, intervention, simulation and in vivo phase

All three participants showed an improvement in general maturation knowledge, as documented in the menstruation checklist and comprehension questions. Figure 2 illustrates participants’ pre- and post-test responses to the menstruation checklist. Haley scored 6/9 correct (66%) prior to the intervention and she scored all of the questions correctly (100%) during the post-intervention assessment. Similarly, scores for Natalie and 3 increased from 6/9 correct (66%) to 8/9 (88%) and 8/9 correct (88%) to 9/9 correct (100%), respectively.
https://static-content.springer.com/image/art%3A10.1007%2Fs11195-011-9244-2/MediaObjects/11195_2011_9244_Fig2_HTML.gif
Fig. 2

Participants responses to the statements on menstruation checklist before and after intervention

Figure 3 demonstrates the participants’ responses to comprehension questions about puberty and menstrual care which were posed by parents after reading the SS during the intervention phase. The results reveal that all three participants were able to understand comprehension questions posed about the social story. Even though each participant had several incorrect responses to the questions in the beginning of the intervention sessions (accuracy ranged from 68 to 95%), they were able to respond correctly all of the questions after the 6th, 3rd and 2nd intervention sessions (Participants 1, 2 and 3, respectively).
https://static-content.springer.com/image/art%3A10.1007%2Fs11195-011-9244-2/MediaObjects/11195_2011_9244_Fig3_HTML.gif
Fig. 3

Participants’ responses to comprehension question during social story reading

Parent Satisfaction Measure and One-Year Follow-Up

The participants’ caregivers completed a post-intervention caregiver satisfaction measure to evaluate the social validity of the intervention procedures and outcomes. Parents’ acceptability of intervention procedures was high as all of the mothers strongly agreed that they enjoyed using the SS as an intervention for menstruation knowledge and care, and that they will continue to use the SS when their daughters have their menses. Furthermore, all of the parents rated items regarding intervention outcomes or effects as either agree or strongly agree with one exception. One parent rated the item “I am satisfied with my child’s current menstrual hygiene skills” as neutral (neither agree nor disagree). Thus, parents’ satisfaction with their daughters’ progress following the intervention was very high overall.

The 1-year follow-up interview results were similarly high and refined the investigators’ understanding of the parents’ views regarding the intervention procedures and its long-term effects. However, we were able to reach only two parents. The parents felt that the SS intervention was very helpful for addressing an area of nascent knowledge and skill among young women with ASD. One parent indicated that “it is a great starting point and really helped … did not know how to address specific ideas” and that she recommended this to other parents because her daughter made progress and this intervention was “thoroughly personalized” for her child. Similarly, another parent commented that the SS intervention gave the mother the opportunity to address an issue she had been neglecting for a while and she felt fortunate because there were currently no resources to help her and that dealing with this subject had created tremendous anxiety for her. For example, she stated, “this study dealt with my greatest fear … calm[ed] my fears and anxiety … I felt supported, felt in control”.

As far as the impact of the intervention, the first parent reported that she has stopped using the SS intervention because her daughter can independently perform menstrual care both at school and at home. She further indicated that her daughter did not have any fear when she first began menses. Susan’s mother reported she sometimes talks about the SS with her daughter and definitely will revisit it when her daughter begins menses. She also commented that her daughter developed some level of understanding about concepts related to menstruating and growing up and asks questions such as “if girls could go swimming when they have periods and how long her period will last once she got it [the] first time”. Even though she does not read the SS on a regular basis currently, she indicates that she will continue this routine once her daughter begins menses.

Discussion

The purpose of this study was twofold: (a) examine the generalized effect of Social Stories with an embedded task analysis in teaching menstrual care routine among three adolescent females with ASD; and (b) evaluate their knowledge related to menstruation and puberty concepts.

Menstrual Care and Knowledge

The results clearly indicate that each of the participants increased their skill in changing a sanitary pad regardless of pad type (wings vs. no wings) following the Social Stories intervention (Fig. 1). The simulation phase of this study, during which the participants were given a pad with red syrup, was a valuable means of teaching the participant to respond to relevant stimuli with regard to learning to distinguish a clean pad from a dirty pad [40, 41]. Participants’ performance during the simulation phase continued to improve. Importantly, Haley began her first menses during the study and observations were conducted in vivo. As seen Fig. 1, her performance reached 100% accuracy for the task analysis on the 2nd day and remained at this level for 4 consecutive days.

One of the omissions in the current literature regarding SS is the lack of generalization data to inform researchers about potential effects of the intervention across conditions or situations [29]. Therefore, these results are promising in that participants not only learn how to change sanitary pads but are also able to generalize their skills when given different types of pads (e.g., wing vs. no wing, clean vs. dirty pad) and when assessed in vivo versus simulation. However, the results of the current study should be evaluated in light of two critical factors. First, participants were able to perform some steps of task analysis correctly prior to intervention. This was more significant for Susan during baseline. Even though we were able to observe improvement in her performance following the SS intervention, the ceiling impact prior to intervention made it more difficult to clearly evaluate the potential merits of the intervention. One explanation for her higher baseline levels might be related to the participants’ ability to perform a typical bathroom routine independently prior to the study. Another explanation might be related to the nature of steps performed correctly and the degree to which intuition plays a role in performance. For example, during baseline, Participants 1 and 3 were able to pull up their underpants consistently. Participants 2 and 3 were routinely able to grasp and remove a dirty pad from the underpants. This probably has something to do with the innate response (i.e., remove foreign object from my underwear, pull up my underpants because this is awkward).

An additional factor worthy of further discussion is related to two participants’ error patterns during the menstrual care routine. Participants 1 and 2 frequently omitted two steps of the task analysis during the intervention phase (i.e., rolling up/wrapping dirty pad and washing hands). To address this problem, the original SS was revised for these participants to include a more clear description of the expected skill. In addition, a simulation phase was introduced for all of the participants to teach them to discriminate a clean pad from a dirty pad. Haley began to correctly perform the omitted steps in consecutive sessions while Natalie required a visual reminder for rolling up and wrapping the dirty pad. Natalie began to wash her hands after the assessment was conducted during the in vivo situation when she experienced her first menses.

In addition to menstrual care, participants were introduced to concepts related to menstruation and puberty, and results indicate that the rate of correct responses increased after the intervention (Fig. 2). It is possible that a participant could learn to provide rote responses to questions or statements such as “The blood is called my period”, or “I will become a woman, like mom”, yet not comprehend their meaning. To address this concern, similar questions were rephrased and posed by mothers during SS reading to probe the validity of the responses and strengthen comprehension (e.g., “What is the blood from your vagina called?” or “Who will you grow to look like?”). As seen in Fig. 3, the participants’ correct response rate improved during the course of study.

To further evaluate the long-term impact of the SS intervention, parents were interviewed 1 year after the study ended. Overall, parents reported positive outcomes for their child regarding menstrual care as well as their knowledge about this milestone of reproductive development. Specifically, Haley’s mother reported that her daughter is still able to independently care for her menstruation both at home and school. She further emphasized that her daughter did not have any fear during the first menses. Susan’s mother also reported that her daughter asked meaningful and spontaneous questions about concepts related to menstruation as described previously. These findings suggest that participants developed an increased understanding of basic concepts about growing up and menstruation and reinforce the validity of findings. However, these outcomes are based on parent reports and future research should gather more and direct observational data regarding the long-term effects of a similar intervention.

Limitations

While the results of this study are promising, there are a few limitations which may affect generalizability. Data collection procedures were conducted by participants’ mothers. Inter-observer agreement data could not be collected due to the personal nature of the intervention. While the investigator was present for about 20% of the assessment sessions to support and answer questions from the female caregivers, the investigator was not permitted to view the actual practice of the skill of changing a sanitary pad. While the female caregivers were trained by the author on data collection and instructed to be honest in scoring the hygiene steps, we were unable to personally evaluate the reliability of the data collected. Further, we did not begin data collection procedures until parents could perform the procedures with 100% accuracy. However, these limitations are perhaps offset by other factors. For instance, the school nurse provided additional insight on one participant who began menses during the study period. She reported that Haley was independently changing her pad and only had to be reminded when it was time to do so. Also, investigators reviewed scoring of parents for observational data and the menstruation checklist to ensure the accuracy of coding and analysis.

Due to scheduling problems, we also were unable to collect a fidelity measure for the intervention procedures. Parents typically preferred to conduct SS reading during their daughter’s morning routines and bedtime routine. In fact, a parent indicated that one of the most difficult parts of this study was allocating additional time for the investigator to come and meet with her. To stabilize the administration of the intervention, parents were trained regarding each procedure, and were given a set of questions to ask during SS reading to standardize and ensure consistency among mothers. After the corresponding question was asked at the end of each page, participants’ responses were recorded by parents. This process helped parents self-monitor the accuracy of implementation as well as evaluate their daughter’s understanding of the story. While long-term outcomes data is limited to 1 year of follow-up and is based on parent interviews only, the ability of the girls to transfer their skills to an in vivo setting and between situations (e.g., types of pads) is promising. Finally, while generality of the findings might be limited due to small sample size, individualization and personal aspect of this study is part of its usefulness.

Implications for Research and Practice

This critical area of research has received little attention [811], perhaps precisely because of the difficulties in measurement which we noted above. This study was designed to overcome this gap in the literature by using SS to teach basic skills and concepts related to menstruation and puberty among young females with ASD.

Social stories are in vogue, and represent an emerging intervention. However, to date, our literature contains an insufficient number of empirically validated examples of their effectiveness [28]. Furthermore, SS are typically employed as a component of a treatment package, which makes it difficult to assess the effect of the intervention itself on individual outcomes. For example, social stories were paired with physical guidance [25], stickers and prize bag reinforcers [42], verbal prompts [23, 25], and video models [27]. In our study, we simplified the procedures and eliminated any additional strategies such as reinforcers or prompts such as modeling and physical guidance. However, the SS did include some photos and visual demonstration of the skills. One might argue that pairing of SS with visual cues and a task analysis resulted in the reported outcome for the three participants. In fact, we know from research that we can teach self-care skills in a variety of ways (e.g., activity schedules, physical guidance) so why include a SS? The social validity of the intervention procedure is part of the answer. Parents in this study reported high levels of satisfaction because the routine was individualized for them and their daughters. Moreover, the intervention promoted an important mother-daughter interaction about a difficult topic. However, future evaluations of social stories which include a component analysis would be valuable. For example, SS in this study could have been developed without any visuals and added only when participants needed additional support for performing skills to evaluate the true potential of the SS intervention.

In addition to individual applications of SS, the intervention should be evaluated with participants who are lower functioning in areas of self-help skills. In the current study, all of the participants were independent in performing self-help skills and were able to perform some steps of task analysis prior to the intervention. Even then, two participants demonstrated difficulties performing two steps of task analysis and one was only able to respond correctly after her mother provided additional assistance for the corresponding step during the bathroom routine. Perhaps, the prior relevant skills contributed to the success of this SS intervention. Therefore, future research designs might benefit from specifically including participants who do not have prerequisite skills or who scored lower in adaptive skills.

An additional implication of this study is related to parental involvement and the implementation of procedures. We selected parents to teach target skills because, often, grooming and hygiene skills taught by school or residential personnel are not maintained because parents or other caregivers have not received sufficient training. Furthermore, the sexual education of individuals with disabilities is typically delegated to parents, yet they often have very limited resources. This study revealed that parents are able to implement procedures with ease, and are comfortable and willing to implement it when needed again. They also are very satisfied with their daughter progress.

The menstruation checklist, comprehension questions and 1 year follow-up data provided a valuable means of assessing whether participants were able to acquire knowledge regarding concepts related to growing up and menstruation. It was very promising that the participant experiencing her first menses did not experience fear when she her menses began, and another participant began to ask meaningful and relevant questions of her mother about these concepts. However, it would be valuable to develop a robust performance-based instrument to evaluate the participant’s knowledge of concepts related to sexuality and reproductive development, and systematically use this measure across a broader population to gauge the true merit of a SS intervention in this context. Our task analysis is a performance-based assessment method and may serve as a useful baseline for this line of inquiry. Finally, future research should evaluate effectiveness of SSs to teach menstrual care skills and knowledge to individuals with special needs including those with ASD by utilizing a larger sample size and a control group to validate the generality of the current findings.

In conclusion, social stories represent an emerging intervention for individuals with disabilities. However, few empirically validated examples of its effectiveness are available. The generalization and social validity measures of this study strengthen its utility, and 1 year follow-up data provide valuable information about the long-term effectiveness of this intervention to educate young women with ASD about their reproductive development. Finally, the parent component of the procedures creates a non-invasive avenue for caregivers to teach the specific sexual education skill of changing a menstrual pad in preparation for menstruation because the SS method allows adolescent females with ASD an opportunity to learn in a nurturing environment, interact with their female caregivers, and practice this important life skill.

Acknowledgment

This research is supported by Grant H325K080108, Office of Special Education programs. The statements in this article do not necessarily represent the views of the U.S. Department of Education. The authors wish to thank Dr. Gregory MacDuff for his insightful comments, Allison Krug for her thoughtful editing, and all the mothers and young girls who participated for their time and assistance.

Copyright information

© Springer Science+Business Media, LLC 2011