Erin E. Woods, Alexandra Gantt-Howrey, Amber L. Pope
To better understand how women portray obsessive-compulsive disorder (OCD) on social media, we conducted a critical content analysis of TikTok videos. We examined a sample of 50 TikTok videos tagged with “#OCD” that were created by women, yielding two themes and multiple subthemes: 1) minimizes OCD symptoms and 1a) uses OCD as a synonym for cleanliness and organization; 2) accurately depicts OCD symptoms, 2a) corrects misunderstanding, and 2b) shares obsessive fears. Results revealed that TikToks perpetuating stigma about OCD were prevalent, though women also posted TikToks presenting OCD in more accurate and comprehensive ways. Implications for mental health counselors are explained.
Keywords: obsessive-compulsive disorder, TikTok, women, content analysis, stigma
Obsessive-compulsive disorder (OCD) is often used in the popular vernacular to describe someone who likes things tidy or who is particular about a certain issue. Individuals commonly use phrases like “I’m so OCD” as captions of social media posts (Pavelko & Myrick, 2016), which may perpetuate stigma and misunderstanding about this complicated condition. According to the American Psychiatric Association (APA), OCD is a serious mental health condition that often results in significant impairment and distress due to the presence of time-consuming obsessions and compulsion (APA, 2022; Fennell & Liberato, 2007). Obsessions are urges, images, or thoughts that are unwanted, distressing, intrusive, and repetitive (APA, 2022) and may adhere to certain themes, such as doubt, contamination, harm, religious ideas, unwanted sexual thoughts, perfectionism, or fear of losing control (Clark & Radomsky, 2014; International Obsessive Compulsive Disorder Foundation [IOCDF], n.d.b.). Moreover, due to the distressing nature of obsessions, individuals with OCD often try to ignore, neutralize, or suppress these thoughts through compulsive acts—repeated mental or behavioral actions that individuals feel they must do to reduce the distress associated with obsessions or to prevent an undesirable event from occurring. Compulsions usually adhere to strict rules, are excessive, and are not realistically related to the concern they attempt to prevent or eliminate. Compulsions often are classified into common groupings, such as checking, cleaning, ordering or repeating, and/or mental actions (APA, 2022; Starcevic et al., 2011). According to prevalence data, women are slightly more likely than men to be diagnosed with OCD in adulthood and often experience later symptom onset than men (APA, 2022).
Appropriate diagnosis and effective treatment of OCD often takes an average of 17 years (IOCDF, n.d.a). Individuals with OCD often delay seeking treatment because of concerns of being viewed in a negative manner and the fear of stigma related to being diagnosed with a mental health disorder (Belloch et al., 2009; Steinberg & Wetterneck, 2017). Conceptualization of OCD ranges from viewing OCD as a less serious concern compared to other mental health disorders, to deeming OCD a chronic illness, to considering OCD as a positive trait. The medicalization of OCD may help individuals feel less stigmatized by identifying OCD as an illness (Fennell & Liberato, 2007). As Fennell and Liberato noted, “Societal conceptions [of OCD] are constantly relevant to respondents, affecting their self-conception and anticipated stigma” (p. 327). To this effect, accurate portrayal of OCD and factually based education for the public have been noted as important action steps to reduce stigma (Webb et al., 2016).
The stigma associated with OCD impacts the disclosure of symptoms to others, including social supports as well as mental health providers. Some may hide their OCD symptoms or make excuses for their behavior out of shame or embarrassment. Further, some individuals report negative perceptions or reactions after disclosing their OCD diagnosis to friends, family, or employers (Fennell & Liberato, 2007). However, some individuals benefit from disclosing symptoms of OCD to their support systems, and others find it helpful to engage and interact with people who also have an OCD diagnosis. Hence, societal conceptions of OCD can impact how individuals cope with their symptoms, including help-seeking behaviors (Fennell & Boyd, 2014; Ma, 2017; Steinberg & Wetterneck, 2017).
OCD Representations on Social Media
Researchers have called for continued examination of the representation of OCD in the media, particularly on social media platforms (Pavelko & Myrick, 2016; Robinson et al., 2019). Although increased social media discussions about OCD may decrease stigma, the often trivial nature of such depictions downplays the seriousness of this disorder (Fennell & Liberato, 2007). For instance, Robinson and colleagues (2019) explored attitudes toward five mental health and five physical health diagnoses on Twitter and found OCD to have the highest rate of trivialization of the 10 disorders, concluding that minimization of OCD symptoms and related suffering is a form of stigma.
How individuals describe OCD in the common vernacular on social media impacts societal conceptualizations of OCD (Fennell & Boyd, 2014; Pavelko & Myrick, 2016). In a quantitative study examining the use of “#OCD” on Twitter, Pavelko and Myrick (2016) identified post after post in which Twitter users employed “#OCD” when referring to non-disordered actions, such as organizing pencils. Tweets labeled “#OCD” were presented to participants, assessing their emotional reactions, stereotypes about OCD, and behavioral intentions to support individuals with OCD after reviewing the hashtagged tweets. Participants indicated increased irritation and decreased sympathy when OCD was framed in trivial language (i.e., language downplaying the seriousness of OCD) versus objective clinical language in the tweets. Further, these correlations varied by gender of the tweeter, with participants reporting increased negative emotional reactivity to women who utilized trivial language rather than to men. Pavelko and Myrick concluded that “Messages regarding trifling, detail-oriented behaviors frequently belittle or downplay the severity of OCD in 140 characters or less” (p. 42).
In a qualitative study, Fennell and Boyd (2014) examined how media portrayals of OCD were interpreted by individuals who have been diagnosed with or believe they have OCD. Similar to Pavelko and Myrick’s (2016) findings, participants reported feeling frustrated by the seemingly casual use of “OCD” in the vernacular and by depictions of OCD that were presented in stereotypical and comedic manners, at times making light of the symptoms (Fennell & Boyd, 2014). Participants noted users exhibited certain symptoms of OCD more frequently than others, namely contamination obsessions, washing and cleaning compulsions, and hoarding behaviors, all of which may portray OCD as a habit rather than a disorder. However, participants expressed appreciation for depictions of OCD in the media, acknowledging that media portrayals helped them identify what they were experiencing as OCD. Hence, media representations of OCD are varied and complex, eliciting mixed emotional reactions and divergent understandings of OCD from individuals who are consuming those messages (Fennell & Boyd, 2014; Pavelko & Myrick, 2016).
Moreover, OCD and associated symptoms are frequently misunderstood, even among mental health professionals who are trained to diagnose the disorder. In a quantitative study of mental health counselors and graduate students, participants exhibited stigma toward OCD symptoms related to sexual thoughts, violent thoughts, and contamination (Steinberg & Wetterneck, 2017). Further, Glazier et al. (2013) found issues pertaining to the accurate and timely diagnosis of OCD among APA members due to misidentification of OCD symptoms. In this quantitative study, participants were asked to provide a diagnosis for five case vignettes, each depicting various OCD obsessive symptoms. There was a 38.9% misidentification rate of OCD across the vignettes, with variation in rates based on the symptoms presented in each vignette. The vignette describing symptoms related to contamination was misidentified at the lowest rate of 15.8%, although the vignette describing symptoms of obsessions related to “homosexuality” was misdiagnosed at a rate of 77.0% (Glazier et al., 2013). In sum, OCD is an often stigmatized and misunderstood disorder, resulting in challenges for individuals living with OCD and for mental health counselors attempting to accurately diagnose OCD in their clients (Fennell & Boyd, 2014; Fennell & Liberato, 2007; Glazier et al., 2013; Steinberg & Wetterneck, 2017).
TikTok: Social Media Phenomenon and Social Change Agent
Although researchers have explored the use of the term OCD in the vernacular and on social media, along with associated impacts on people living with OCD (Fennell & Boyd, 2014), researchers have yet to explore how particular mental health diagnoses such as OCD are portrayed and discussed on TikTok, a popular social media application, or “app,” released globally in 2017 (Iqbal, 2022). TikTok’s content consists of brief videos created by users, which can be viewed and interacted with by other users (Anderson, 2020). TikTok uses an algorithm to show users videos that appeal to their interests. Users interact on the platform through likes, comments, reactions, and direct messages. Hashtags are added to videos to help individuals search for specific types of content. To have full access to TikTok, a user must have an active account; individuals with accounts can create a profile page, which can be used with various privacy settings (Anderson, 2020). The scope of TikTok is vast, reaching an average of 689 million users worldwide every month, with 100 million users in the United States (Iqbal, 2022). According to Iqbal (2022), TikTok reached over 1.4 billion users in 2022. The app is frequented by individuals of various ages, nationalities, genders, and socioeconomic statuses and in 2022, TikTok was downloaded over 3.3 billion times (Iqbal, 2022).
Based on TikTok’s wide reach, it is reasonable to assume that content shared on the app has implications for how society views certain topics, including mental health disorders, as meaning is constructed through interactions with others on the application. Vitikainen et al. (2020) described TikTok as a social change agent, noting that despite the app’s ban on political campaign–related content, users have utilized TikTok for political movements, such as joining together to sabotage a Donald Trump rally in 2020 (Lorenz et al., 2020). Further, TikTok videos and hashtags were used to spread information about wearing masks during the COVID-19 pandemic (Basch, Fera, et al., 2021). The World Health Organization TikTok videos related to wearing a mask were viewed over 57 million times, and just 100 TikToks with the hashtag “#WearaMask” were viewed over 500 million times (Basch, Fera, et al., 2021).
As the app has such an extensive user base, “TikTok has great potential in conveying important public health messages to various segments of the population” (Basch, Fera, et al., 2021, para. 18). It stands to reason that if TikTok videos can influence social action and aid in the spread of public health information, they also could be a powerful tool in either upholding or dismantling misunderstanding and stigma around mental health disorders such as OCD. However, researchers have highlighted the existence of misinformation on popular social media platforms, including TikTok (Sharevski et al., 2023). For example, in various studies on COVID-19 information conveyed via TikTok, researchers found that much of the information is misinformation (Basch, Meleo-Erwin, et al., 2021; McCashin & Murphy, 2022). Sharevski et al. (2023) found that in viewing TikToks that included debunked abortion misinformation, approximately 30% of participants believed the information to be true. These findings highlight the prevalence of health-related misinformation on TikTok and related implications for professionals and the general public alike. Therefore, to better understand current social discourse around OCD, we conducted a content analysis to answer the following research question: How are women portraying OCD on TikTok?
We conducted a deductive, qualitative content analysis of 50 TikTok videos to examine how OCD is being discussed and portrayed by women on the large-scale social media platform of TikTok, which encompasses the power to disrupt stigma and influence the narratives attributed to OCD. Our decision to utilize content analysis was influenced by the use of this methodology in existing literature exploring OCD and media (Fennell & Boyd, 2014; Robinson et al., 2019), and a content analysis aligned with our intent to interpret women’s portrayal of OCD through social discourse on TikTok. A content analysis is a systematic yet flexible process utilized to derive meaning from a set of data (Schreier, 2014). Qualitative content analysis is aligned with social constructivism and is concerned with exploring the “meaning and interpretation . . . of symbolic material, [and] the importance of context in determining meaning” (Schreier, 2014, p. 173). To describe meaning from our sample of TikTok videos, we followed the steps of a qualitative content analysis (Schreier, 2014): define the research question; select the content to analyze; develop a coding frame; segment and trial code the data; evaluate the coding frame; conduct the main analysis; and interpret and present the findings.
After determining our research question, we selected TikTok videos that met the following criteria: a) the TikTok video included the hashtag OCD (#OCD), and b) the primary person in the video presented as a woman and/or included she/her pronouns in their profile bio. We chose to focus on individuals presenting as women in this study because OCD symptomology varies based on gender in studies comparing cisgender women to cisgender men, with women having slightly higher rates of OCD diagnoses than men. Further, women exhibit cleaning-related symptoms more often than men (APA, 2022), and excessive cleanliness is commonly displayed in media depictions of OCD (Fennell & Boyd, 2014). Women also have unique experiences related to the intersectionality of gender, social discourse, and mental health diagnosis and treatment, or lack thereof (Bondi & Burman, 2001; Robinson et al., 2019). Further, women’s trivialization of OCD on social media may elicit stronger negative emotional reactions from consumers, such as annoyance and decreased sympathy toward individuals with OCD (Pavelko & Myrick, 2016).
We chose the 50 TikTok videos with the most views for our sample (Dworkin, 2012). We were able to determine these videos by searching for “#OCD” within the TikTok app in February 2021. The sample was analyzed in March 2021. Similarly, in another content analysis, Fowler et al. (2021) selected the first 50 TikTok videos using a particular hashtag for their sample. They noted the influence of the TikTok algorithm, as the algorithm determines which videos are shown and in which order. Moreover, we determined the sample size based on other studies that engaged qualitative methods to analyze videos on various social media platforms, some of which utilized a sample size of fewer than 50 (Fowler et al., 2021; Johnson et al., 2019, 2021; Wallis, 2011). Next, we deductively determined codes in a concept-driven way (Schreier, 2014) based on the extant literature surrounding OCD, stigma, and popular understanding of the diagnosis. These initial codes were stigma perpetuated and accurate information about OCD shared. It is important to note that at the time of data analysis, the current edition of the Diagnostic and Statistical Manual of Mental Disorders was the DSM-5 (APA, 2013). The DSM-5-TR (APA, 2022) was released in 2022; however, there were no updates to the OCD diagnostic criteria in the text revision.
The research team identified more codes during the review of the data, and we altered codes to be more specific to the data, including daily routine, checking OCD, and feeling misunderstood. During the segmentation phase of the coding process, the research team divided the data into individual units, or segments, based on a thematic criterion. More specifically, we divided the larger chunks of data (i.e., the entirety of what was said in a TikTok) into individual units (i.e., sentences) based on the aforementioned codes. Next, we went through a pilot round of coding using the predetermined codes on approximately 50% of the data. We evaluated and made changes to the coding frame as necessary, developing more specific codes to best represent the data. From there, we proceeded to the main analysis phase, in which the research team coded all data according to our final coding framework and determined themes and subthemes based on the coded data. Each team member individually determined themes, and then the team members met to compare, discuss, and alter the themes until we reached consensus on the themes and subthemes that best represented the data. Of the total sample, 48 videos comprise the two final categories.
The research team for the content analysis consisted of the first two authors of this article, Erin E. Woods and Alexandra Gantt-Howrey, who are cisgender heterosexual (cishet) White women and are mental health counselors familiar with OCD. To increase trustworthiness, Woods and Gantt-Howrey practiced weekly reflexive journaling to become more aware of and bracket our biases throughout the data analysis, with the recognition that bias cannot be completely bracketed (Creswell, 2003). As part of the reflexive journaling process, we recognized and considered various sociocultural factors at play in our own lives, including our existence as cishet White women in the United States. Moreover, we identified various biases and expectations we held, including expectations of seeing OCD used as a non-clinical descriptor, previous knowledge related to OCD misdiagnosis and misunderstanding, and the belief that OCD should be used only in reference to the actual disorder. In an attempt to bracket these biases throughout the data analysis process, we engaged in frequent dialogue with one another to consider and evaluate assumptions that arose during the data analysis. Finally, to increase trustworthiness, the third author, Amber L. Pope, a licensed mental health counselor and counselor educator who identifies as a cishet White woman, acted as an auditor and reviewed the final themes and subthemes according to the data (Creswell, 2003). More specifically, Pope reviewed the data as well as the themes and subthemes developed by Woods and Gantt-Howrey. Pope then offered feedback on the results (e.g., use of theme names to accurately represent the data), and Woods and Gantt-Howrey integrated Pope’s feedback into the final results presented below.
This investigation explored how women communicate about OCD on TikTok. Two themes and three subthemes emerged from the data: 1) minimizes OCD symptoms and 1a) uses OCD as a synonym for cleanliness and organization; 2) accurately depicts OCD symptoms, 2a) corrects misunderstanding, and 2b) shares obsessive fears. A clear dichotomy was found: Many TikTok videos depicted women using OCD as an inaccurate descriptor, perpetuating stigma surrounding the diagnosis, while others shared factually based information in alignment with the DSM-5 description of OCD, often representing their own experiences with OCD. Below, our findings are illustrated with rich descriptions from the data.
Minimizes OCD Symptoms
The first category, minimizes OCD symptoms, describes participants’ portrayals of OCD in a way that either minimized or negated symptom severity, and/or described the disorder in a manner that does not align with the DSM-5 definition of OCD. Twenty-eight videos (56%) from the sample are included in this category. Many TikToks in this category used the term “OCD” as a synonym for being very clean or organized, or to portray an unrelated phenomenon, such as collecting items or creating a spreadsheet. One TikTok of a woman describing her father exemplifies this misuse of the term “OCD”: “This is my dad and he has a problem . . . because he has the OCD. And you might have it too if your 800-count DVD collection is in alphabetical order from ‘8 Mile’ to ‘Young Frankenstein.’” This quote is representative of the trivialization of the OCD diagnosis. Moreover, a TikTok about a mother’s feelings of frustration over her daughter’s messy painting further demonstrates the stigma perpetuated by many TikTok videos, as the mother stated:
Do any other moms relate to the extreme anxiety this gives me? I can sit here and watch but I’m dying on the inside. This is very hard for me. But I will sit here . . . and not let my anxiety and OCD get the best of me.
Uses OCD as a Synonym for Cleanliness and Organization
The subcategory uses OCD as a synonym for cleanliness and organization represents TikTok videos in which women used OCD as a descriptor for a clean person, and includes 10 of the 28 videos in this category. Building upon the first category, minimizes OCD symptoms, this subcategory further demonstrates explanations, examples, and use of the term OCD in ways that do not accurately describe the disorder. A popular audio clip was utilized frequently in our sample and was often paired with visual content of individuals organizing or cleaning various objects and spaces. The woman in the audio stated:
When they come into my house and they also think that I am a sociopath, that I take the time to do this once a month. Like, you know what? You say OCD is a disease, I say it’s a blessing.
Through equating OCD to “a blessing” and also trivializing the term “sociopath” to simply describe someone who is well-organized, such TikTok videos minimize the OCD diagnosis and the experiences of individuals with OCD, equating the disorder to something it is not—a proclivity for cleanliness and organization. Furthermore, other TikToks with #OCD were solely about cleaning or organizing. A woman in one TikTok described a “bathroom hack for a deep clean” as she displayed bleach and a bowl of hot water. In another TikTok, these words crossed the screen for the viewer to read: “*My bff being messy*” and, subsequently, “*My OCD kicking in*,” while the video displays an unmade bed.
Accurately Depicts OCD Symptoms
The second category, accurately depicts OCD symptoms, is defined as women portraying information that aligns with the DSM-5 description of OCD symptom constellations and current research on OCD. Twenty videos (40%) comprise this category. Women in the TikToks in this category typically indicated they had an OCD diagnosis, describing their unique experiences with OCD and explaining how their symptoms align with the DSM-5 definition. For example, TikToks in our sample represented the following aspects of the DSM-5 symptoms of OCD (APA, 2013): recurrent intrusive thoughts, performance of a compulsion, and “clinically significant distress or impairment in social, occupational, or other important areas of functioning” (p. 237). For example, one TikTok begins with the words “Live with ______ for a day” across the screen. A woman is then pictured “selecting” OCD from a variety of mental health diagnoses. In other TikToks, users describe their compulsions, such as a woman narrating her need to perform various rituals like choosing a certain color shirt, or another in which a woman flips a light switch repeatedly.
The first subcategory, corrects misunderstanding, encompasses videos in which women with OCD sought to correct misinformation or inaccurate portrayals about OCD. Eight of the 20 videos from the second category are included in this subcategory. The following quote demonstrates a woman debunking popular misconceptions of OCD symptoms: “What people think OCD is *picture of an organized desk.* What it’s like for me: *woman spraying perfume.* My brain: ‘spray it 3 times or your mum will die.’” In another TikTok, a woman lamented the prevalent, stigmatized view of OCD:
OCD is not cute. She doesn’t wear big glasses and chunky sweaters while she neatly lines up her stationary in color order. She’s probably the most misunderstood disorder, to the point where people nonchalantly use her name to describe a neat person.
Importantly, the speaker describes OCD as “misunderstood,” directly contradicting the previously described “version” of OCD as simply a proclivity for neatness or organization.
Shares Obsessive Fears
In this subcategory, shares obsessive fears, women provided more specific information and details in their TikToks to depict OCD in a more holistic, accurate manner. Eleven videos are included in this subcategory. The fears women shared included the deaths of loved ones, losing one’s job, accidentally setting one’s house on fire, losing a relationship, and not locking one’s front door. One woman’s TikTok portrayed the intrusive thoughts and subsequent fears she experienced frequently:
Documenting a side of OCD that people don’t usually see: Did I tell my mom I love her before she went to bed? What if she dies on the way to work tomorrow? Should I wake her up and tell her just in case? No, that will make her mad. Wait, but did I lock the doors? Did my sister make it home safe? She didn’t text me; her location is off. Oh, she’s fine; she just responded. Should I check the locks?
This quote demonstrates the intrusive thoughts that individuals with OCD often experience. More specifically, the intrusive thoughts in this example include fears such as death of a loved one, uncertainty, and potential lack of safety for self and others.
The purpose of this study was to increase understanding of how women are portraying OCD on TikTok to inform counselors on the current social discourse around OCD. Our findings substantiate the extant literature and provide new insight, possibilities, and practice implications given this novel exploration of how women discuss OCD on TikTok. The categories that emerged from our content analysis reveal the variety in the types of TikToks women created and hashtagged with the term “OCD,” with the two main themes being minimizes OCD symptoms, demonstrating the trivialization of OCD by women on TikTok, and accurately depicts OCD symptoms, in which women attempted to correct inaccurate perceptions about OCD by sharing their own experiences and factual information about the diagnosis. Our results also suggested that women with an OCD diagnosis shared more factually based depictions of the disorder than the women who did not indicate a diagnosis in their TikTok videos. Our findings of two dichotomous themes are unsurprising given other findings on health-related misinformation on TikTok (e.g., Basch, Meleo-Erwin, et al., 2021; McCashin & Murphy, 2022), yielding opportunities for professionals to provide accurate information on the platform.
The majority of women whose content fell in the accurately depicts OCD symptoms theme indicated they had an OCD diagnosis. These women corrected misinformation about OCD and also shared their own experiences of living with OCD, depicting the seriousness and pervasiveness of their obsessive thoughts. Our results indicate that women with OCD may desire to see OCD portrayed correctly in the media, in ways that are different from the stereotypical or comedic depictions often prevalent in mainstream media (Fennell & Boyd, 2014). These negative stereotypes may contribute to women’s oppression through the perpetuation of misinformation. Women with OCD also may be motivated by the fear of stigma (Steinberg & Wetterneck, 2017) and the desire to have their mental health diagnosis taken seriously. Fennell and Liberato (2007) noted the importance of societal conceptions of OCD to those with the diagnosis; therefore, the creators in our sample may be motivated to alter the popular understanding and trivialization of OCD (Pavelko & Myrick, 2016; Robinson et al., 2019) through their TikTok content as a result of living with the disorder themselves and the impact of their OCD symptoms on their functioning. Moreover, motivation to post publicly about one’s experience with OCD may help women connect with others (Fennell & Liberato, 2007) through a large social media platform.
Yet our other main theme of minimizes OCD symptoms supports findings from previous research (e.g., Pavelko & Myrick, 2016; Robinson et al., 2019) that OCD is frequently depicted in the media and popular culture in a manner that minimizes the symptomatology or severity of OCD symptoms. Our results illustrate that the content created by women on TikTok often portrays OCD as synonymous with cleanliness and organization, hence trivializing OCD symptoms. Multiple TikToks (n = 4) utilized a popular audio: “You say OCD is a disease; I say it’s a blessing,” over a video of someone organizing, often some sort of household item, which aligns with previous findings that OCD is typically portrayed in the media by characters with washing and cleaning compulsions (Fennell & Boyd, 2014). Additionally, multiple videos in the uses OCD as a synonym for cleanliness or organization subtheme included language and descriptions that stigmatized cleaning symptoms, such as “*My bff being messy*,” *My OCD kicking in*,” and “I literally saved my toothbrush to like get the corners and clean cuz I’m OCD.” Despite cleanliness being the most visible depiction of OCD (Steinberg & Wetterneck, 2017) and more often seen in women with OCD than in men (APA, 2022), the way these symptoms are portrayed do not holistically represent OCD or encompass the potential effects of this disorder and instead contribute to the continued trivialization of this disorder.
Our findings yield various implications for counselors and future research. Because of the popularity and breadth of TikTok content, both clients and counselors are likely to use the app and subsequently view TikToks that contain minimizing, trivializing, or stigmatizing information about OCD. Counselors are not immune to holding stigmatizing views about OCD (Steinberg & Wetterneck, 2017). Exposure to trivializing content may influence how counselors view OCD symptoms and the severity of OCD with their clients, potentially contributing to misdiagnosing OCD. Our results indicate cleanliness and organization were the common depictions of OCD on TikTok, which could result in counselors having a limited understanding of OCD symptomatology and misidentifying other types of OCD symptoms that fall into groupings such as unwanted sexual thoughts or religious obsessions (Glazier et al., 2013). Mental health counselors responded with social rejection and general concerns to case vignettes of clients with contamination obsessions and cleaning compulsions (Steinberg & Wetterneck, 2017); consumption of social media that equates OCD to cleanliness and organization could perpetuate similar stigmas toward OCD among counselors.
For clients, exposure to content that trivializes and/or stigmatizes OCD may lead to hesitancy to seek treatment (Steinberg & Wetterneck, 2017) or even a failure to recognize one’s symptoms as indicative of a mental health issue (Fennell & Liberato, 2007). Hence, our results stress the importance of counselors increasing their knowledge of OCD in its various presentations and examining their own beliefs and biases toward OCD symptoms, recognizing that our reactions as counselors may impact how clients choose to present or hide their symptoms of OCD out of fear of stigmatization. During the mental health assessment process, counselors may want to ask clients displaying OCD symptoms questions related to their perceptions of the disorder such as, “How have you seen OCD depicted by characters on TV or in the movies?” or “What do you believe about OCD according to what you have seen/read on social media?” For clients who indicate inaccurate or negative conceptualization of OCD, psychoeducation may be useful to correct misinformation or misconceptions about OCD that clients obtained from the media. Counselors also may want to help clients develop media literacy skills, particularly for clients who consume a lot of social media, so clients can effectively analyze and reflect on the messages they encounter regarding OCD.
To enhance counselors’ knowledge of OCD, counselor educators can use the portrayals of OCD on social media to inform classroom discussion and activities when teaching about mental health diagnosis. For example, counselor educators can ask students to describe what they have seen about OCD in the media and explore how these examples do or do not align with the DSM-5 description of OCD. Counselor educators also can encourage students to explore their own biases and perceptions about OCD, which may help reduce the stigma held by mental health counselors related to OCD symptoms (Steinberg & Wetterneck, 2017) and increase accurate diagnosis of OCD (Glazier et al., 2013).
Further, our results demonstrate the importance of public education to decrease stigma related to mental health disorders (Webb et al., 2016), particularly targeted to individuals who do not have an OCD diagnosis, as they may be more likely to share or create trivializing content. As Fennell and Liberato (2007) stated, “the need for more public information on the lived experience of OCD and mental ‘disorders’ cannot be stressed enough” (p. 328). TikTok shows great potential to spread health information (Basch, Fera, et al., 2021), and this social media platform could be utilized to help share more accurate depictions of OCD. For example, counselors, individuals with OCD, and other advocates may consider utilizing the power of a targeted “hashtag” campaign, with the goal of reducing stigma toward OCD through countering the impact of stigmatizing content (Robinson et al., 2019). This type of positive and factual representation of OCD also may help to combat societal inequalities that can be perpetuated through the stigmatization and trivialization of OCD, and hashtag campaigns may be enacted by individuals and larger counseling organizations alike.
TikTok has a unique feature called “stitch” that allows users to combine another user’s video with the one they are creating. Some counselors are already using the “stitch” function as a means of psychoeducation and advocacy to correct misconceptions of mental health in TikTok videos, where counselors can directly connect their educated responses to the original video that contained inaccurate information. To effectively challenge the stigma surrounding mental health diagnoses, counselors need to be aware of the current public discourse occurring on social media platforms and use this information to develop advocacy-based interventions. In line with the American Counseling Association’s Code of Ethics (2014), counselors should consider other means of engaging in advocacy to benefit those diagnosed with OCD, such as providing public education in their local contexts and supporting public policies that could help provide affordable treatment of the disorder. The IOCDF’s Advocate Program (IOCDF, 2022) may prove to be a beneficial resource for such work.
Concerning future research, we suggest utilizing a larger sample of TikTok videos, analyzing social media content on other platforms, and including gender-expansive individuals and cisgender men as part of the sample to gather more perspectives. Additionally, researchers can compare who is creating the social media content and where accurate or inaccurate portrayals of OCD are occurring on social media. Quantitative research may provide more insight into how individuals with an OCD diagnosis create media content compared to those who do not have a diagnosis. Understanding the nuances in how OCD is portrayed across platforms or creators can enhance counselors’ knowledge of how to use social media as appropriate resources or social connections for their clients with OCD. Finally, more information on how OCD is depicted on social media can help counselors better recognize the messages their clients receive about OCD when using social media and improve their ability to correct the unreliable information their clients consume on these platforms.
Various limitations should be taken into consideration. Given the nature of qualitative research, the findings of this study cannot be generalized to larger groups. We did not obtain IRB approval for this study, given that we used publicly available information for our data, and we did not directly contact the video creators to clarify gender identity, OCD diagnosis, or other demographic information that would have enhanced the description of our sample or allowed us to explore how intersectionality impacts depictions of OCD. Because we did not gather demographic information, we determined inclusion based on the individuals’ presentation as a woman and/or use of she/her pronouns in their profile, and our results are based solely on the content the women disclosed in their videos. For example, we cannot conclusively determine that women with a diagnosis share more accurate information about OCD on TikTok as compared to those without a diagnosis. Additionally, we did not contact the creators to gain a more thorough understanding of their intended message when creating the video. Finally, it should be noted that by utilizing the 50 most viewed TikToks with #OCD, videos that were less widely viewed and shared were not included in our sample, perhaps limiting our understanding of more nuanced portrayals of OCD on TikTok. Utilizing the most viewed TikToks as our sample may have contributed to the resulting dichotomous themes, capturing only the predominant trends of minimizing or accurately depicting OCD symptoms.
OCD is a serious and often debilitating mental health disorder (APA, 2022) that is frequently misunderstood and misrepresented in mainstream culture (Pavelko & Myrick, 2016; Steinberg & Wetterneck, 2017). Through a content analysis of TikTok videos created by women with the hashtag “OCD,” our resulting themes and subthemes revealed a mix of perpetuating stereotypes and minimizing OCD symptoms and of sharing accurate information and personal experiences concerning OCD. These findings can assist counselors and counselor educators to better understand the types of social media content clients are viewing and potential harmful messages clients may internalize about OCD through exposure to media. Further, counselors should consider their own consumption of social media and examine their perceptions of and biases toward OCD throughout the treatment process. Likewise, counselor educators should adjust their pedagogy to encourage student exploration of misconceptions and enhance training in how to accurately diagnose and treat OCD in their future work as mental health counselors. Although social media can perpetuate stigma, it can also be used as a tool for powerful positive change, and we encourage all readers to consider the accuracy of the content they post on social media when it comes to depicting mental health disorders.
Conflict of Interest and Funding Disclosure
The authors reported no conflict of interest
or funding contributions for the development
of this manuscript.
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Erin E. Woods, PhD, LPC, serves as Clinic Director at the College of William & Mary. Alexandra Gantt-Howrey, PhD, NCC, is an assistant professor at New Mexico State University. Amber L. Pope, PhD, LPC, LMHC, CCTP, is an assistant professor at the College of William & Mary. Correspondence may be addressed to Alexandra Gantt-Howrey, P.O. Box 30001, MSC 3AC, Las Cruces, New Mexico 88003, firstname.lastname@example.org.
Abortion is common, yet stigmatized. In some cases, abortion patients may experience feelings of sadness, guilt, anger, and other signs of emotional distress after their pregnancy is terminated. This article offers guidance for counselors seeking to provide nonjudgmental support to promote adaptation and recovery among abortion patients experiencing emotional distress. A brief summary of different ways to conceptualize emotional distress after abortion is provided. Next, a general cognitive behavioral framework is introduced, and common thought and behavioral patterns that may contribute to unresolved distress are explored. The article concludes with general recommendations to promote a respectful, collaborative alliance.
Keywords: abortion, abortion counseling, stigma, emotional distress, pregnancy
Abortion is a common medical procedure. An estimated one in four women in the United States will have an abortion by age 45 (Jones & Jerman, 2017). Although prevalent, abortion is highly stigmatized and politicized. Many people understand abortion in terms of the competing rights of the fetus (to live) and the person who is pregnant (to retain autonomy over one’s body and life). As such, legal abortion challenges conceptions of the nonviable embryo or fetus as having independent rights (Solinger, 2013). In the United States, abortion is more strictly regulated than any other medical procedure (Sanger, 2017), and these regulations contribute to a misperception that legal abortion is more medically dangerous than childbirth. Depending on state-specific regulations, abortion patients may be required to wait a certain amount of time after their initial clinic visit, to receive information about fetal development, or to observe fetal imagery before they are permitted to make final abortion care decisions (Sanger, 2017). Requirements like these imply that potential abortion patients are unlikely to make sound decisions without outside assistance (Norris et al., 2011), and also create different types of potential stressors depending on where a patient seeks abortion care.
Because abortion is so stigmatized, counselors and community members across many different settings (e.g., clinic volunteers, talk-line counselors) may encounter abortion patients experiencing distress after their procedures. This article offers guidance for both professional and paraprofessional counselors who are approached by a woman seeking support. The focus here is specifically on supporting a patient who has had a legal abortion procedure by a licensed health professional. Women seeking illegal abortions from unlicensed providers face additional physical and psychological risks that are beyond the scope of the current article.
Although different abortion patients will have different concerns, there are at least five general recommended aspects of after-abortion counseling (Needle & Walker, 2008). First, patients tend to disclose what happened, under what circumstances, and their broader social, medical, and family history. Second, a patient’s decision-making process and knowledge about the abortion procedure before and after it occurred warrant full exploration. Third, counselors can support emotional stability by accepting and exploring a patient’s feelings, including ambivalence as experienced both in the past and in the present. Fourth, spiritual and cultural issues can be addressed; these may include religious and familial values about abortion, parenting, and the concept of forgiveness. Finally, counselors can promote client self-care, potentially by identifying “safe” people to whom patients can disclose. When working within this broader framework, and while drawing upon best practices for pregnancy loss (e.g., Wenzel, 2017), a cognitive behavioral therapy (CBT) framework may help foster recovery. This article discusses (a) different ways to understand abortion-related distress, (b) concepts and methods from CBT that may help counselors support abortion patients, and (c) general recommendations for the respectful use of questions and language.
Understanding Emotional Distress After Abortion
Counselors may draw upon vastly different ways of understanding how and why abortion patients experience emotional distress after abortion. In the early 1990s, Vincent Rue proposed the existence of post-abortion syndrome (PAS), a variant of post-traumatic stress disorder. According to Speckhard and Rue (1993), “the trauma involved in being both attached to and responsible for the death of one’s fetal child can be emotionally overwhelming, and cause a range of symptoms” (p. 5). Symptoms of distress may manifest as guilt, self-directed blame and anger, sadness, intrusive thoughts about fetal death, and problematic family relationships, among others. Speckhard and Rue suggested that in some cases, distress may fluctuate with the menstrual cycle. In other cases, distress may remain dormant until patients experience subsequent reproductive events such as childbirth or menopause. Although some find PAS to be useful in conceptualizing cases, there have been longstanding debates about its validity (e.g., Dadlez & Andrews, 2010; Edwards, 2009). PAS has not been recognized as a formal medical or psychiatric diagnosis. Furthermore, PAS is often used in political contexts to argue against abortion rights and access (Dadlez & Andrews, 2010; Kelly, 2014). That is, “pro-life” activists use PAS to argue that potential abortion patients are likely to be emotionally harmed by abortion and therefore should be protected from making the decision to seek abortion.
In contrast, British “pro-choice” activist Ann Furedi (2016) argued that abortion-related distress may be more strongly related to the circumstances that led to pregnancy and the need for abortion than the actual abortion procedure itself. Although not all abortions occur after an unwanted pregnancy, Furedi wrote that “one of the few generalizations we can make about women seeking to end an unwanted pregnancy is that they are in a place they would rather not be. An abortion is no woman’s ambition, and an unwanted pregnancy is often (although not always) a marker of a lot of unwanted things in her life” (p. 52). Furedi also posited that the right to self-determination is key to psychological well-being, and for individuals who may become pregnant, self-determination involves the ability to plan when and how pregnancy is resolved. According to Furedi, access to family planning services, including abortion, is required for individuals to live as full citizens of society as well as to provide responsibly for their families. As such, restricting access to abortion is emotionally harmful because it denies those who are pregnant autonomy over both their bodies and their lives. This position is supported by research showing that patients who are denied an abortion show greater psychological distress than those who receive an abortion (Biggs, Upadhyay, McCulloch, & Foster, 2017). Importantly, both groups showed either stable or improved symptoms after a 5-year follow-up, indicating that initial distress did not generally lead to long-term or diagnosable conditions.
Abortion-related distress also can be conceptualized within a stress and coping framework (Major et al., 2009). Most abortions occur following an unintended pregnancy, and unintended pregnancy itself is a stressor that may increase risk for both short-term distress and longer-term mental health problems (Herd, Higgins, Sicinski, & Merkurieva, 2016). Individuals experience abortion as more or less stressful depending on a number of factors, including the timing of their abortion, their reasons for the decision, the type of procedure, their personal appraisals of abortion and other options, others’ social reactions, and the broader social and cultural context (Major et al., 2009). Overall, evidence from rigorous empirical studies indicates that legal first-trimester abortion does not increase risk for mental health problems. In addition, patients who have a later abortion for a wanted pregnancy due to fetal abnormality experience similar mental health outcomes compared to patients who miscarry, experience stillbirth, or experience newborn death (Horvath & Schreiber, 2017; Major et al., 2009).
Although research data do not suggest that legal abortion typically causes mental health problems (Horvath & Schreiber, 2017), many abortion patients experience symptoms of emotional distress, and in some cases, prolonged distress. Less commonly, some abortion patients experience mental health problems after their abortion procedures. In general, patients with a history of emotional disorders such as depression and those with low social support are at greater risk for mental health problems after a pregnancy resolves either by abortion or childbirth (Major et al., 2009; Russo, 2014). Abortion-specific risk factors for emotional distress include terminating a wanted pregnancy, feeling pressured into abortion by other people, perceiving the need for secrecy, and participating in or identifying with a cultural or religious group that teaches the idea that abortion is wrong (Major et al., 2009). These abortion-specific risk factors for distress warrant attention by counselors who are seeking to support abortion patients. Assessment of these factors may help inform how the counselor understands the sources of evident distress.
A Cognitive Behavioral Framework
Counselors who rely on a CBT framework help patients to become more aware of their thoughts, to differentiate between thoughts and facts, to objectively evaluate the evidence for their thoughts, and to consider making changes when warranted. For example, patients may change their thoughts after reflecting on the ways in which their thinking is incomplete or inaccurate. Alternatively, patients may change their behaviors or circumstances after reflecting on evidence that shows behaviors or circumstances to be problematic.
From a CBT perspective, emotional distress following abortion may be conceptualized as emotions that are linked to thoughts and behaviors related to the abortion experience. Identifying and talking about thoughts and behaviors that are related to strong negative emotional states can help patients who are feeling stuck and not able to move forward. Abortion patients in distress may benefit from becoming more aware of and talking through thoughts that elicit emotional distress and exploring these with a supportive listener. Cognitive behavioral therapists often use an ABC (activating event, belief, consequence) model in working with patients to collaboratively understand how patients are experiencing their lives. To illustrate, an activating event (A) might be scheduling a follow-up appointment after an abortion procedure. A thought or belief (B) might be, “I shouldn’t have had sex if I wasn’t ready to be a mother,” and the consequences (C) of that belief may be emotional (guilt, low self-esteem), behavioral (keeping the abortion a secret), and interpersonal (feeling disconnected from loved ones after an abortion).
Behavioral avoidance is another common target of CBT interventions. It can be useful to ask about situations or events that a person has avoided since her abortion. To illustrate, attending a baby shower, interacting with young children, or going to the doctor might all be situations that a distressed abortion patient avoids. Such situations might elicit thoughts and beliefs about having had an abortion that, in turn, elicit aversive feelings. In some cases, avoidance might not be sustainable or healthy in the long-term. For instance, some abortion patients avoid sex because they worry about pregnancy and making another abortion decision. Such patients may benefit from discussing barriers to contraception use. They additionally may benefit from discussing the use of more effective methods of contraception. Examining the evidence for ease of use and effectiveness could help prevent a future unintended pregnancy. In other cases, avoidance may be adaptive. In particular, it may be wise to avoid telling certain people about having had an abortion when the costs of disclosure are likely to outweigh the benefits. Genuine collaboration with the abortion patient is necessary to weigh the benefits of maintaining current thoughts and behaviors against the benefits of potential changes.
CBT counselors often differentiate between primary (basic) and secondary (manufactured) emotions (Resick, Monson, & Chard, 2017). Primary emotions occur as a direct result of an event. For example, an unintended pregnancy may lead to feelings of shock. The end of a pregnancy may lead to feelings of loss. Being insulted by protestors or denied access to medical care may lead to anger. Primary emotions tend to fade in intensity over time. Secondary emotions, in contrast, arise as an indirect result of an event, based on thoughts about the event. In particular, when an abortion patient thinks about having made the wrong decision, this thought could elicit guilt. When a patient thinks about how others may respond negatively to learning about her abortion, this thought could elicit worry. If different types of abortion-related thoughts are habitual or persistent, these associated emotions also will tend to persist, and the abortion patient may thus feel stuck in negative feelings. Thoughts that may not be fully accurate, constructive, or conducive to recovery, such as those described below, may be potential targets for intervention.
Some abortion patients find themselves stuck between multiple conflicting thoughts (and associated feelings). For example, an abortion patient might think, “It hurts to know I’ll never be forgiven by my Lord, but there’s no way that my family could manage another child,” or “I’m a feminist, so there’s no reason for me to feel sad.” In the former case, the patient switches the focus of her thinking between her religious tradition and her perceived family obligations. In the latter case, the patient switches between thoughts about her political views and her actual experience. Regardless of their content, experiencing conflicting thoughts can be confusing and disorienting, which may add to the overall experience of emotional distress. In addition, when thoughts are in conflict, one type of thought can be used to invalidate the other, preventing a full awareness and acceptance of each. Helping the patient acknowledge and accept the existence of conflicting thoughts may reduce confusion and distress. Furthermore, considering the evidence for each thought independently may allow the patient to consider which thoughts are worth holding onto and which might be less accurate, reasonable, or conducive to healing.
Common Thought Patterns Associated With Abortion-Related Distress
From a CBT approach, several specific patterns of thought may be associated with abortion-related distress. Hindsight bias is the tendency to use knowledge from the current situation to re-interpret past situations. Patients who exhibit hindsight bias believe they knew then what they know now, and they may assume that they have failed in some way by making the decision that they did. One approach to hindsight bias is to ask for more detail about the patient’s life context and specifics of the decision-making process at the time of the pregnancy. Counselors might ask questions such as: “How did you find out you were pregnant? What were your initial reactions? Who did you tell, and why? How did they respond?” Counselors might specifically ask what the patient perceived at the time as the reasons to consider abortion versus the reasons not to. “If you can try to remember during that time of your life, I’m curious, what seemed like good reasons for the decision? What seemed like good reasons not to make this decision?” In making the decision to end a pregnancy, abortion patients tend to consider the impact of pregnancy, childbirth, and parenting on their current and future lives, health, obligations, and goals (Finer, Frohwirth, Dauphinee, Singh, & Moore, 2005). Given that many abortion patients have already given birth, many also consider the impact of pregnancy, childbirth, and parenting on children already in the home (Jones, Frohwirth, & Moore, 2008). When this reflection is accurate, counselors could comment that the abortion patient seemed to put a lot of thought into the decision, or they might reflect hearing that the patient had considered multiple important factors. A counselor might observe that it sounds like the patient made the best decision based on the available information at hand, although some important information may not have been accessible at the time. Some patients who are not parenting children might appreciate hearing that this type of thoughtfulness seems like a quality that would allow them to be a loving and effective parent in the future, when they are ready.
Another type of thought that may be related to abortion-related distress is belief in a just world. Many people hold the simple belief that good things happen to good people, and thus bad things happen to bad people. For some abortion patients, an unintended pregnancy is bad, an unhealthy pregnancy or fetal anomaly is bad, or an abortion is bad; thus, the self is bad. When an abortion patient terminates a pregnancy because of outside pressures, such as when parents, a partner, or a workplace would not accept a pregnancy, childbirth, or parenting, this lack of acceptance can also lead to self-blaming thoughts. A patient may perceive herself as having made bad decisions about relationships or workplaces that do not offer her support. An important corollary of belief in a just world is that a person who is bad does not deserve to feel better or to receive support. Some abortion patients feel that they deserve to be punished, and they deprive themselves of intimacy with others. Others may believe they do not deserve to participate in self-care activities or to “indulge” in interventions such as relaxation training, mindfulness meditation, or distress tolerance.
To address belief in a just world, it can be helpful to explore how the patient developed this belief as well as to explore both supportive and disconfirming evidence. Upon reflection, many patients are likely to acknowledge that belief in a just world is a common theme in fairy tales and other lessons imparted to very young children. Likewise, patients are likely to acknowledge that accidents sometimes happen, people can make mistakes and still be good and moral, and that sometimes bad things happen to good people. Inquiring about other people who they perceive as deserving and not deserving of distress and hardship may be helpful. For example, counselors might ask patients to identify others who have “gotten away with” crimes without punishment or censure and to identify good, deserving people who have faced unfair experiences or mistreatment. In addition to these explorations, a counselor might empathize with the wish that people would get what they deserve, even if the world does not always work that way.
Outcome-based reasoning, a tendency to assume that emotional distress is the natural result of a bad decision, is closely related to belief in a just world. As applied to an abortion patient in distress, the end result (distress) may be thought of as reflecting the quality of the decision to terminate the pregnancy (bad). Outcome-based reasoning reflects an interest in a world that is predictable and orderly. As with belief in a just world, asking questions about the evidence for outcome-based reasoning may be helpful. Counselors could wonder aloud about times that the patient has seen good intentions lead to problematic outcomes, good behavior lead to punishment, or bad behavior lead to reward. In addition, patients using outcome-based reasoning often assume that they would feel better if they had made a different prior decision. As such, the counselor might explore with the abortion patient the possible consequences of decisions other than abortion. Useful questions might include: “What were the other options that you considered? If you instead decided to become a single parent, or to make an adoption plan, what would that look like now? What would be the consequences of these different decisions, emotionally and otherwise?” Thinking through the available options and considering all the different consequences of each may allow patients to consider the possibility that alternative prior decisions also might have been distressing, and perhaps even more so. Patients might conclude that each possible option was likely to lead to different types of stress and challenges, some in the short term, and some in the long term.
The final type of thought pattern addressed here involves all or none thinking. Some abortion patients hold themselves singularly responsible for becoming pregnant, for experiencing a complicated or unhealthy pregnancy, for making an abortion decision based on reasons that now seem suspect (such as trying to please their parents or a partner, or not having enough money), or for causing the circumstances that led them to decide that abortion was the best option. One approach to this type of thought pattern is to explore what seems to be a reasonable amount of responsibility rather than hyper-responsibility. Some apparently hyper-responsible patients might appreciate hearing a reflection along the lines of, “It sounds like you played a role in the unintended pregnancy, which makes you feel badly, and it sounds like other people and circumstances also played a role.”
In other cases, abortion patients assign complete responsibility for the abortion decision to other people who urged them to end their pregnancies. Careful exploration of this thought pattern is needed. Some financially or emotionally dependent abortion patients, particularly younger ones, may have faced strong pressure from parents or a partner to seek an abortion. In addition, pressuring someone into an abortion may be part of a larger pattern of coercive control or intimate violence. If an abortion patient describes being compelled by another person to abort a pregnancy, it may be helpful to screen for intimate violence specifically as well as to ask about other ways in which they feel constrained within their close relationships.
In the absence of coercive control or violence, some patients still may blame their abortion decisions on the wishes of other people. Other abortion patients may regret taking the advice of others and may hold extreme negative thoughts about themselves as well as others who influenced their decisions. In both types of cases, counselors might ask questions to help explore boundaries and assertiveness within an abortion patient’s intimate relationships. It could be useful to ask when and under what conditions the patient believes it is useful to take others’ feelings into account when making important decisions. It may be appropriate to reflect that it can be challenging to balance different sources of influence. Abortion patients who feel like they should have stood up for themselves or for their unborn child might benefit from considering what barriers to assertiveness they experienced and what degree of influence they want others to have over their lives. Patients might also develop a plan for acting differently in the future when they are making a personal decision that affects others in their social networks. Collaborative work with a counselor may help to promote assertiveness while also conveying to the patient that she is deserving of respect.
Conveying Respect for Abortion Patients
This article has focused on ways of understanding abortion-related distress, thoughts that may be associated with abortion-related distress, and topics of conversations that might help promote recovery. Suggestions have been offered about what to listen for, possible questions to ask, and thoughts and feelings that might be reflected. This final section offers suggestions about methods of asking questions and general use of language in order to promote rapport and the patient’s sense of feeling respected, understood, and validated. Most broadly, rapport between the counselor and the abortion patient is essential, and the goal should be for the abortion patient to feel both the presence of unconditional positive regard and the absence of negative judgment on the part of the counselor (e.g., Kimport, Foster, & Weitz, 2011).
Socratic dialogue. Socratic dialogue involves asking questions that help others come to new understandings about their thoughts, behaviors, and experiences (Padesky, 1993). Questions may allow the patient to consider new or different information that has not been considered. When an abortion patient describes patterns of thoughts that sound distressing, a counselor might ask for more information in a way that gently challenges those thoughts. At the same time, answers to the questions may reveal that the counselor had an incomplete understanding of important aspects of the situation. Because no counselor can know the unknown, questions should be asked in the spirit of mutual inquiry, with constructive curiosity, and with compassion. Questions should not be asked to interrogate or to imply that the counselor knows the correct way to think and feel. Likewise, questions should not be asked to try to elicit a specific right answer. Rather, questions are asked in a genuinely open way with the goal of eliciting more information about the events that occurred and how those events may be perceived at present. In the process of reflecting on answers to open questions, the abortion patient has the opportunity to explore whether there are alternative ways to think about an experience that are accurate, balanced, and reasonable, and that lend themselves to self-compassion and healing.
Language related to gender, social roles, and pregnancy. In general, to be accurate and validating, counselors are advised to use the terms that patients themselves use to describe themselves, others, and their experiences. This means listening carefully and asking open questions to learn about a person’s situation and about how the patient identifies. It is advisable to listen for how the abortion patient describes their gender identity, and if they are in a partnered relationship, how the patient describes their partner’s gender, because not all people who seek abortion identify as women and not all are involved in heterosexual relationships.
It is useful to listen for words that refer to the different social roles that a patient or others may occupy, including mother, father, baby, child, or fetus. Some couples immediately identify themselves as mothers or fathers when one person is pregnant. Others only identify themselves in these ways after a certain point in the pregnancy or after birth. When individuals are already parenting children, they are likely to identify themselves as mothers or parents independent of the pregnancy that ended in abortion. Reflecting the patient’s own words shows respect and validation. For example, consider an abortion patient who asks, “What kind of a person fails to protect her child and instead selfishly decides to end her child’s life?” In response, it is advisable for the counselor to use the word “child” (not “fetus”) and to ask for more information about the decision-making process to better understand the circumstances. Additionally, it might be helpful to reflect feelings of guilt or shame and to ask about the thoughts the patient is having that connect to those feelings.
Counselors should be aware that the language that they use may reflect assumptions about whether the pregnancy was wanted or contraception was used. Although most (but not all) pregnancies that end in abortion are unintended, some unintended pregnancies are happy accidents. Additionally, some intended pregnancies become unwanted after life circumstances change, such as when a relationship ends or health problems emerge. Regarding contraception, some people who are sexually active do not use contraception or do not use it correctly, but sometimes contraception fails, and in cases of reproductive or sexual coercion, a patient may be blocked from effective contraceptive use (Chamberlain & Levenson, 2012). As such, until hearing how the patient describes the situation and how conception occurred, it is recommended to avoid referring either to the “father” of the pregnancy or to the “partner.” In some cases, abortion patients who seem to feel singularly responsible for becoming pregnant make no mention of anyone else. Questions that might help identify others involved in conception could include, “Who else knows about the pregnancy?” or “Tell me about the episode that led to you becoming pregnant.” If a patient says that the pregnancy happened because her boyfriend’s condom broke, it is validating for the counselor to refer to her “boyfriend,” but if the patient discloses that she was raped, the counselor can refer to the “perpetrator” or the “rapist.”
Language related to politics and medicine. Counselors are advised to avoid language that may have direct or implied connections to politics, including either “pro-choice” or “pro-life” activism. In discussing the abortion decision-making process, the term “choice” can imply connotations of being “pro-choice.” Instead, the terms “decision” and “option” can be substituted with ease. For example, “Can you tell me about how you decided to terminate your pregnancy?” or “It sounds like you picked the option that made the most sense to you at the time.” Similarly, although it is often important to explore different types of thoughts and feelings that occurred at different times, such as before and after an abortion procedure, it is best to avoid the term “post-abortion.” Because of connections between “pro-life” activism and PAS, the phrase “after abortion” can be substituted as a politically neutral and factually accurate alternative. Finally, to work effectively with abortion patients who have safely and legally terminated pregnancies, it is recommended that counselors develop a basic understanding of abortion and its terminology (Grimes & Stuart, 2010), including the difference between surgical abortion (removing the contents of the uterus with instruments, without incision) and medical abortion (ingesting pills to expel the products of conception from the uterus).
Abortion patients who are in distress can be coping with stigma as well as a variety of realistic stressors and concerns. At the same time, abortion patients might be experiencing patterns of thought or behavioral avoidance that are contributing to intense or prolonged emotional distress. By applying concepts and methods from CBT, both professional and paraprofessional counselors across a variety of community settings may participate in constructive conversations with patients that foster adaptation and recovery. Counselors may collaborate with patients to help them become more aware of their thoughts and how these thoughts are related to feelings and behaviors. Conversations with supportive, nonjudgmental individuals who serve in a counseling role may allow abortion patients to reflect honestly and realistically on their past experiences and current lives. Such reflections may give way to self-compassion and may help to transform distress into feelings of acceptance and peace.
Conflict of Interest and Funding Disclosure
The authors reported no conflict of interest
or funding contributions for the development
of this manuscript.
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Jennifer Katz is a professor of psychology at SUNY Geneseo. Correspondence can be addressed to Jennifer Katz, Bailey Hall, 1 College Circle, Geneseo, NY 14454, email@example.com.
This article, written by a parent of an adult child with spina bifida, invites counselors into the life experiences of children with handicaps and their families. The description of these experiences highlights current problems with the stigma this population experiences. The author describes the varying disability identities and orientations that have evolved within the disability culture and wider society. Counselors are encouraged to use unbiased terminology in both research and clinical work with children with disabilities. Solutions are offered for counselors to implement in practice and research to further overcome stereotypes, develop disability awareness and provide helpful counseling. The author provides practical interventions for a variety of challenges where counselors may be useful to children with disabilities and their families.
Keywords: children, disabilities, stereotypes, stigma, handicaps
I am a counselor, a life coach and the parent of an individual with a disability. Since entering the disability community 28 years ago with the birth of my daughter, I have attended both workshops and seminars designed to assist parents concerning children with disabilities or chronic illness. In 2005, I attended eight monthly sessions of Partners in Policymaking, a national leadership training program for people with developmental disorders and family members of young children with disabilities, designed to achieve productive partnerships between people needing and using services and those who make public policy and laws. In this article, I provide information about children with disabilities and their family systems and offer recommendations for counselors working with children with disabilities and their families.
Disability Identity and Orientation
I use the term disability in this article, while the preferable word to describe differences is variation, a more neutral term that lacks negative connotations for children in society. Variations provide richness and diversity in life that can be noted without being denigrated or overemphasized. Depending on how children or adults identify with and orient themselves to the impact of their disabilities, both personally and with respect to society at large, they may have varying preferences for acceptable terms. The reader can consult Gilson and DePoy (2004) for a discussion on disability identities and orientations.
The saying “Nothing about us without us” is an informal one within the disability community. Hahn (1993), a social scientist with over 10 years of research experience in the disability field and personal experience using crutches and a wheelchair since the age of 6, has spoken of a minority model of disability that has its origins in a sociopolitical model. This model arose when individuals with non-transient or lifelong disabilities stated that research using prior models did not seem relevant to their lived experience. Thus, policies and services that arose from these models did not result in meaningful life improvements. Attitudinal variation has arisen within the disability subculture regarding identities and orientations toward disabilities. A sociological ideology for conceptualizing individuals with disabilities and their families has emerged, which varies from the older entrenched medical model that regards disability as illness, tragedy or a negative situation requiring treatment and rehabilitation. Using the medical model, people with disabilities and their families are conceptualized based on their acceptance of and adaptation to disabilities. The sociological model focuses on the larger society or system and its reaction to the individual, rather than examining the person with the disability as the identified patient. Impairment and dysfunction are conceptualized as part of the larger system, with its handicapping environment and public attitudinal barriers, rather than within the individual who has varying abilities and is referred to by this larger system as a person with a disability.
A wide range of models have evolved to the point that Darling (2003) proposed an exploration of disability orientations that include normalization, crusadership, affirmation, isolated affirmation, situational identification, resignation and apathy. Familiarity with these orientations will help counselors understand the disability identities and orientations of their clients and their family members. It is beneficial to acquire a clearer understanding of disabilities and their actual rather than imagined impact on clients in order to improve one’s diversity awareness.
Eliminating Ableism and Pity
Professionals entering the multilayered maze of counseling children with disabilities must honestly explore their positive and negative preconceptions about people with disabilities. Counselors should understand and confront ableism, defined as “the discrimination or prejudice against individuals with disabilities” (Ableism, 2015). Furthermore, counselors should examine and challenge their own disability stereotypes prior to entering the counseling room with clients impacted by disability. Scope (2014), a disability-related charity in the United Kingdom, challenges ableism in the initiative “End the Awkward” found on the their website (http://www.scope.org.uk/awkward). This site allows readers to take an informal quiz to see if they are an “ambassador of cool” or a “captain awkward” around people with disabilities and also a link to watch short television advertisements designed to decrease awkwardness around individuals with disabilities. Helping professionals need to internally clarify the distinction between empathy and sympathy. Counselors can invite open discussion about the disability, as they would invite clients to share information about any subculture, so they feel free to clarify pertinent aspects of their lives and disability in counseling that might otherwise go unaddressed.
Helping professionals also should use non-handicapping language to affirm the individuality and personhood of clients. The Publication Manual of the American Psychological Association (American Psychological Association, 2010) has provided the following recommendations for unbiased terminology in research and academic writing:
The overall principle for “nonhandicapping language” is to maintain the integrity (worth) of all individuals as human beings. Avoid language that objectifies a person by her or his condition (e.g., autistic, neurotic), that uses pictorial metaphors (e.g., wheelchair bound or confined to a wheelchair), that uses excessive and negative labels (e.g., AIDS victim, brain damaged), or that can be regarded as a slur (e.g., cripple, invalid). Use people-first language, and do not focus on the individual’s disabling or chronic condition (e.g., person with paraplegia, youth with autism). Also use people-first language to describe groups of people with disabilities. For instance, say people with intellectual disabilities in contrast to the retarded (University of Kansas, Research and Training Center on Independent Living, 2008).
Avoid euphemisms that are condescending when describing individuals with disabilities (e.g., special, physically challenged, handi-capable). Some people with disabilities consider these terms patronizing and offensive. When writing about populations with disabilities or participants, emphasize both capabilities and concerns to avoid reducing them to a “bundle of deficiencies” (Rappaport, 1977). Do not refer to individuals with disabilities as patients or cases unless the context is within a hospital or clinical setting. (p. 76)
Children with Disabilities and the Family System
The family of a newborn diagnosed with a disability attempts to become acquainted with the infant and gain parenting skills, while still in a bustling neonatal intensive care unit. The family may be experiencing what McHugh (1968) called anomie, which is the idea that life is no longer normal, does not make sense, and is out of one’s control. The family’s experience may include focusing on the physician’s words, hearing the startling news that their child is receiving the diagnosis of lifelong disability, and considering what impact the disability will have on their child and family. Simultaneously, numerous specialists and nurses may be verbally giving the parents large amounts of vital, unfamiliar information in complex medical terminology, while evaluating how the parents are adjusting. The parents may be asked to make urgent life-altering medical decisions about surgeries that will affect their child’s well-being. Helping professionals must realize that parents need time to adapt to this life-changing situation.
Parents who have not lived with a disability as a part of their lives need time to absorb the impact of the disability on their child and family as they move through anomie into the period that Seligman and Darling (2007) called normalization and resume the activities that were punctuated by the adjustment to the disability. Families acclimate to a new normal that contains a member with a disability. Gradually parents become capable of a knowledgeable dialogue with the medical community and may even inform physicians of promising treatments for their child, eventually realizing that they and their child(ren) are capably managing the practicalities of the disability, gaining needed services, and coping when unexpected changes and challenges arise.
During normalization, family members strive to help each other, and they build satisfying experiences and memories as they travel through the family life cycle. This process is neither easy nor quick; it can be gut-wrenchingly painful. However, it can produce much personal growth, the shifting of previously held values and priorities, and the satisfaction of a job well done. The process of normalization is not, as some assume, an insurmountable burden to bear, but rather a growth-producing challenge that can be met, sometimes joyfully. Counselors should beware of assuming that all children with disabilities and their families contain pathology. Many families have the internal and external resources to adapt to the disability over time without the need for professional intervention. Helping professionals should avoid referring to these families and children as special, as this term minimizes and unintentionally disrespects the effort required by ordinary people who face extraordinary challenges while meeting the other demands of daily living.
Parents’ Adjustment to the Diagnosis
People assume that parents whose children receive a disability diagnosis at birth are grieving the loss of an ideal perfect child. I suggest that the parents have grown to love the child prenatally and are grieving what their actual child is experiencing or may experience throughout life. The parents may struggle with the pain of relaying the diagnosis to siblings, grandparents and extended family members. Olshansky (1962), one of the initial researchers of families of children who have cognitive disabilities, recommended that chronic grief is an expected reaction of a caring parent to parenting a child with a disability and much more useful than the oversimplified idea of acceptance or rejection.
Some developmental disabilities are discovered prenatally or shortly after birth, or result from premature birth. Some disabilities are diagnosed later in childhood, as parents notice missed developmental milestones or the child loses previously-acquired skills through illness, accident or physical abuse. Other parents may suspect a disability in their child prior to receiving an official diagnosis. Counselors should remember that the pang of sadness a parent may feel when his or her child misses a developmental milestone or experiences social stigma is normal and does not mean that parents are coping poorly.
Parents who are trying to be hopeful are not necessarily denying the disability. Automatically applying diagnoses from the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders (American Psychiatric Association, 2013) to the parent’s reaction to an initial diagnosis of disability in their child can add additional stress to the family system. Family members of children with disabilities may be inclined toward mental health difficulties that do not interfere with normal life functioning until the additional stress of the disability and the requirements for managing it overload the person’s coping skills, either temporarily or over time. The process of normalization takes time to unfold. Helping professionals should build a caring relationship with the family at the time of diagnosis and be available later if mental health issues begin to interfere with normal functioning. Counselors should use their clinical skills of differential diagnosis to understand and unearth the interplay between the parent’s orientation to disability and his or her conceptualization of disability identity to avoid framing a mindset as a mental health disorder.
The child’s parents or siblings may have psychiatric diagnoses or relational difficulties that predate the child’s disability diagnosis. Such issues may interfere with family resilience and the process of normalizing the disability and promoting healthy child development. Addictions, anxiety, depression, adult attention-deficit/hyperactivity disorder and other diagnoses can impede parental well-being and effective parenting. Thompson and Gustafson (1996) suggested that improved child development and adaptation to chronic childhood illness are associated with parental social support, adjustment and decreased stress. Elman (1991) suggested the need for counseling depressed family members. Crnic and Greenberg (1990) indicated that decreased competence in children is related to parental personal stress that interferes with effective parent–child communication. After many years of counseling families, I have come to believe that the family system can operate more smoothly if the individual members address mental health issues that impede marital satisfaction, family cohesion, conflict resolution, stress management, child rearing, medical management and other positive coping skills.
The birth order of a child with a disability can change the future family structure as the parents contemplate whether to have additional children. If the child with a disability is the parents’ firstborn and the disability has a genetic component, additional children may share the same disability, in a milder or more severe form. Parents may consult geneticists to explore the probabilities of a recurrence of the disability while they consider their ability to incorporate various scenarios into their lives. Childhood disabilities have direct and indirect psychosocial and financial costs for families. Seligman and Darling (2007) discussed direct costs of adaptive equipment, therapy and child care, and indirect costs like fees for housing modifications, work absences, and parental difficulty for career advancement. Sometimes one parent chooses not to work outside the home in order to be available for tasks related to managing the disability, a decision that reduces the family’s income. Regardless of the counselor’s or geneticist’s viewpoints, the decision to pursue additional children can be a complex, grueling decision for individuals whose convictions do not give them the option of attempting to conceive and then terminating a life prenatally if a disability is detected, especially for parents who already love a prior child with that or another disability.
Self-Concept Development among Children with Disabilities
The child with the disability develops opinions about the family and himself or herself. Children create a sense of self from the reflections they see in their interactions with others. Unfortunately, people with cognitive, emotional or physical differences encounter distorted mirrors daily. The communication they have with others often is filtered through an unspoken screen of ableism and stigma. In Disability Is Natural: Revolutionary Common Sense for Raising Successful Children with Disabilities, Snow (2001) described the Euro-American history of disability and myths. When the child encounters a person who has not had close friendships with anyone with disabilities, the person may display uncomfortable, awkward behavior around the child. The person may stare, avoid eye contact, treat the child with pity, act like the child is “special,” speak to the parents instead of the child or act in other confusing ways that pose barriers to intimacy. Children with disabilities sometimes do not question the interpretations of others and may begin to believe that anomalies are bad and that they are inherently bad, rather than just different. Children with disabilities also may not realize that the awkwardness in the room arises from discomfort in the other person and may wonder what is wrong with them.
Though people with disabilities are a natural part of society, they continually encounter barriers to full participation in society. In a society containing environmental and attitudinal barriers—for example, the lack of ramps or curb cuts necessary for people in wheelchairs to navigate their community—the simplest of tasks can be continually inconvenient.
Counselors must recognize that the disability is the child’s constant companion, 24 hours a day, 7 days a week, which may include a complex medical condition that affects various parts of the body and its functions, possibly resulting in pain. The vocabularies of children with disabilities may include medical terminology and treatments that are complicated to understand and time consuming to accomplish. The child may have a visible disability that is always on display for others’ comments and stares; alternatively, the child may have a disability that is hidden and misinterpreted by people in the community. Until one accompanies a person with a visible disability in public, one does not even realize what a luxury it is to go about daily tasks without others stopping to look for extended amounts of time with expressions of wide-eyed shock or curiosity. Counselors can teach children without disabilities to react less awkwardly around children who have disabilities.
Counselors should remember that each child and family is unique, but be aware that children with disabilities are more like children without disabilities than they are different. They simply vary in some way. The child may be in counseling because of internal challenges resulting from the disability or external emotional, social, attitudinal, educational or physical barriers to inclusion. However, the child may be in counseling for a difficulty that would arise even if there were no disability. It is helpful for children with disabilities to realize that some of the struggles they encounter are common to all children.
The Emotional Toll of Services
Community services, such as Respite Care and Individual Education Plans, are available to assist children with disabilities and their families with some of the challenges presented by the disability. People are vetted to see if they qualify for services and terms from the medical model of disability are utilized. Unfortunately, in order to receive services designed to maximize potential, children with disabilities must interact with agency staff members who discuss and emphasize deficits and rehabilitation in their presence. Children with disabilities may find the language and terminology insulting and demoralizing, considering that they have not had an accident and do not feel the need to be compared or repaired.
The disability subculture is not homogenous. Developmental disabilities include spina bifida, cerebral palsy, diseases of the muscles and bones, neurological disorders, craniofacial deformities, metabolic disorders, endocrine disorders, seizure disorders, cleft palate, cleft lip, visual impairment and blindness, hearing impairment and deafness, mental retardation, attention-deficit/hyperactivity disorder, learning disabilities, autism, chromosome and genetic disorders, and numerous others, including those that are extremely rare and possibly unnamed. Children and families in these various subgroups have some experiences in common and other distinct differences due to the various traits, challenges, onset and societal reactions to their particular disabilities.
Complex Client Group
Counseling children with developmental disabilities is like working a complex three-dimensional puzzle. Each individual child is as distinctive as a fingerprint. The child is a member of a family that has its own characteristics, rules and roles. The child and his or her family members’ temperaments affect reactions to a disability. Within any given family, there may be varying opinions among members about how to handle the disability or avoid dealing with it, which can impact family interactions. Children with handicaps come from a variety of ethnic cultures and heritages that influence the adjustment of the family members’ reactions to the child’s differences.
Counselors should not underestimate the benefits that some children with disabilities and their families derive from strong connections to their faith or other forms of spirituality, if they are not part of a religious community. Seligman and Darling (2007) wrote that some religious communities contribute a great deal of support to the families of children with disabilities. Poston and Turnbull (2004) discovered that other families have difficulty finding a religious group that will incorporate their child and family into the faith community. They reported that having a child with a disability, at times, is the precipitating factor to the development of spirituality in family members. Schiele (2000) and Parham (2002) proposed that aspects of the Afrocentric service models are beneficial when working with African Americans since these models incorporate interdependence, collectivity, affect and spirituality. These benefits may be generalizable to other ethnic groups. McCarthy (1995) encouraged counselors to explore and use spiritual ideas and techniques to benefit the physical and mental well-being of clients.
Belief in a benevolent power or ideological concept can sustain exhausted, discouraged individuals when situations are beyond their control despite their sincere proactive efforts. During those moments when they feel that they cannot continue without despair, they can let go and allow God, a higher power or whatever spirituality they cling to for sustenance intervene. For example, when sending their day-old neonate into spinal surgery, religious parents may draw comfort from the belief that a divine being continues with their infant and the surgeon beyond the operating room doors that separate them from their child. Children whom physicians predict will die continue against all scientific evidence to live and thrive; sometimes parents have supernatural theories about these outcomes. Turnbull, Turnbull, Erwin, and Soodak (2006) referred to spirituality as the way that people derive meaning in their lives and interact with the sacred. According to Skinner, Correa, Skinner, and Bailey (2001), spirituality can influence whether a family considers the addition of a member with a disability to be a blessing or retribution for an offense (Chan, 1998; Chan & Lee 2004; Rolland, 2003). Frisco (as cited in Seligman & Darling, 2007) indicated that the majority of the grandparents surveyed reported that religion and belief in God helped them more comfortably accept a disability in their grandchild.
Multiple Interconnecting Systems
The child and his or her family have multiple interconnecting systems to navigate, while attempting to achieve the normal activities of being a family and helping the child accomplish typical developmental tasks, without reducing this goal to a tedious, life-draining behavioral chart that devalues the child’s personhood and the spontaneity and freedom of childhood. Nichols (1984) considered an open system to be a group of interconnected parts of a whole that interact with each other and the larger environment around information, material and energy. General systems theory and cybernetics provide concepts that assist counselors in studying the multiple elements that constitute the collective experience of living with a disability. These systems may include physicians, therapists, schools, tutors, insurance companies, respite care services, disability advocacy and support groups, community activities, neighbors, playmates, extended family, and other groups of people who make up the ever-evolving gears of an interacting environment that contains the child and his or her nuclear family subsystem. Miller (1995) affirmed that a well-functioning psychosocial environment is vital to the child’s healthy maturation, and counselors can work with children and their families to reduce feelings of being overwhelmed.
Disabilities are not as inherently stressful as what parents go through while trying to help their child with optimal growth and development. Acquiring adaptive equipment, services, educational accommodations and community participation can be tedious and frustrating. Parents often are required to contact busy physicians, educators, automated insurance provider telephone messages and agency coordinators to get documentation for equipment that they need in order to accomplish simple tasks that the dominant culture takes for granted. Normal activities like comfortable body positioning, eating, toileting, ambulating and being integrated into school classrooms can be prolonged, inordinately exhausting, emotionally draining and time consuming.
Once services and equipment are acquired, the family unit may become part of a large, complex, constantly evolving system including, depending on the particular disability, educators, adapted physical educators, therapists (e.g., physical, occupational, speech, respiratory), tutors, dieticians and medical specialists (e.g., pediatricians, gastroenterologists, orthopedic surgeons, cardiologists, urologists, audiologists). Many disabilities require adaptive equipment that is initially unfamiliar to the family. Medical professionals tell parents and their children about assistive health devices that others with similar disabilities have found helpful. The family may need time to adjust to the reality that their child has to use the device, to examine the risks and benefits of equipment and treatments for the disability, and to find someone who provides the service locally.
Health devices are often expensive and must be paid for through insurance, government programs or private payments. Obtaining the equipment may be a lengthy, convoluted process that involves repeated negotiation with insurance providers and resubmitting payment requests or searching out alternative funding sources if insurance payment is denied. Once the adaptive equipment arrives, there are often therapy appointments to individualize the fit of the equipment to the child, teach the parents and child how to use the product, coax the child to use the aids, and check to see that the product is doing no harm to the child. It can take weeks of trial and error to modify equipment that is problematic. This process may repeat often as the child grows older.
Children may want to participate in activities that are outside the realm of the Americans with Disabilities Act. Parents may find themselves having to reassure and encourage the people who run these programs to include their child. This process may involve educating Scout leaders, religion teachers, preschool staff, parents of the child’s classmates, camp staff and others about the disability and how to make modifications to include the child, and also may involve calming fears that it will be too difficult for the staff or the child to manage or too dangerous for the child to participate. Most children with limitations want the same independent adventure opportunities as other children; to try new experiences; risk, fail, try again and succeed; and sometimes surpass others’ expectations for them.
It is important to help families see that their child needs to be surrounded by a support system that has challenged negative assumptions about people with disabilities. Children with an observable disability do not have the gift of anonymity that most people take for granted. They need comfortable places to just be themselves, recharge emotionally and exist as a member of the group. They need the enduring support and friendship from others who are easy, normal and natural in their interactions with the children, to inoculate them against assaults to their worth that they can encounter in the larger society. On some level, children may think that their parents are giving them affirmation because of their roles as parents. Children need to know that people other than their parents also acknowledge their skills, temperament, accomplishments and personhood. Children need interactions with people who allow them to be authentic and respond genuinely and honestly; thus, children learn how to be in healthy relationships.
Interventions to Disable Ableism and Promote Friendships
Parents of children without disabilities sometimes tell their children not to stare at children with disabilities but may not make a suggestion for a replacement behavior, like saying, “hello.” Thus normal opportunities to interact are missed and taboos that encourage shunning and bullying continue. This behavior can contribute to unnecessary adjustment problems in adulthood that Cadman, Boyle, Szatmari, and Offord (1987) and Rutter, Tizard, and Whitmore (1970) have suggested are related to experiencing social rejection early in one’s life. To promote integration and change attitudes, it would be helpful for school counselors to offer diversity training concerning disabilities for students and parents throughout the school population. Informational sheets could be sent home in the beginning of the school year or brief presentations could be included at parent meetings. Some of the child’s classmates may grow up and one day become parents of children with disabilities.
Social Skills Development
Miller (1995) reminded us that the peer social system is the main area where children develop and hone relationship-building and social problem-solving skills. However, some children with disabilities have trouble forming relationships with their peers for a variety of reasons. They may lack the opportunity to socialize with peers in a regular setting or have trouble ambulating to where children are playing. They may have a human aide who impedes normal peer interactions, tagging along to manage a healthcare issue. They may not understand the social mores of others their age because of so much time spent with parents and adult health care providers or due to aspects of their disability. In addition, service providers may talk to parents about the child as if the child is not present. Parents can learn to redirect physicians, nurses and other service providers to speak to the child in age-appropriate language.
Tovray and Wilson-Portuondo (1995) suggested that children may need formal help to learn social skills for developing friendships if they do not notice or understand social cues and nonverbal messages from others. Children with disabilities may struggle with nonverbal learning issues or characteristics on the autism spectrum, making engaging or understanding others difficult. They also may have behavioral disabilities that alienate other children or result in the continual loss of recess privileges. They may have medical therapies after school and daily tasks to complete between visits. Children with disabilities may spend an unreasonable amount of time trying unsuccessfully to complete homework assignments. Counselors can help a child with a disability by making a referral to a neuropsychologist to determine strengths and weaknesses, and then the counselor, parents, neuropsychologist, teachers and tutors can help the child develop more effective study and executive functioning skills that match his or her temperament and learning style. Parents and counselors can work together so that children with disabilities have opportunities to be and not just do activities.
Educating Peers to Reduce Isolation
Sometimes children ask questions undiplomatically. For example, a preschooler with spina bifida might be asked, “Why do you walk weird?” Some parents of children with disabilities visit the school on the child’s first day and speak to the child’s classmates in an attempt to decrease painful queries that can invite social anxiety. Preparing the class as a group also frees peers from being preoccupied with unanswered questions. If professionals help the child and family create and practice an elevator speech, perhaps these unhelpful questions will occur less often. The elevator speech can be a few sentences to explain the disability when meeting new people, which could prevent the disability from becoming a taboo subject. Talking openly can relieve other children’s unrealistic fears of catching the disability.
Returning to the previous example of a preschooler with spina bifida, the child could introduce herself by name and say something to let her classmates know what they have in common, like, “I am 5 years old. I have a brother and sister, and two dogs. Who else has a brother and sister? Does anyone else have a dog? I like to play, read books and eat ice cream. I am looking forward to being your friend.” After this joining statement, she could then give a brief age-appropriate description naming her disability and saying how it affects her and others, as follows: “I have spina bifida, so some of the nerves in my back don’t talk to my legs to tell them to feel or move. The other parts of my legs have to work harder, so I walk differently. I’ll pass around my old braces, like the ones I wear to help me walk. Please don’t mess with my wheelchair unless I ask for help. You can’t catch spina bifida like you do a cold. I don’t run so please walk slower, so I can keep up. Let’s talk and see how we can all play together.” Sometimes the child may not have the social or cognitive skills for public speaking or may simply prefer that the parent give the elevator speech. However, the child can learn self-advocacy by sharing some part of the elevator talk. After the elevator speech, the parent can ask if anyone has any questions. Parents sometimes ask educators to send a letter home to the parents of their child’s typical classmates with a brief description of the disability so that parents understand and include the child in after-school invitations that are extended to the rest of the class. Then the child and peers can begin the school year ready to focus on getting to know each other, forming friendships and learning classroom content.
This introduction could reduce the isolation of children with disabilities by demystifying their differences and allowing them to assimilate into the group. Children with disabilities, their classmates, school staff and families need practical skills for dealing with bullies. Parents can search for schools that take bullying and violence prevention seriously and have a school strategy in place to discourage bullying. Bullies may try their unacceptable behaviors on various class members; however, they tend to choose people who are alone to be their victims of repetitive bullying. Children with disabilities can learn strategies for standing up to the bully. Classmates of children with disabilities can acquire the information necessary to become friends and allies for the student in areas where there may be less adult supervision such as the lunchroom, bathrooms, hallways, or on the playground. They can help intervene to include the child with a disability in pleasant encounters with children from other classrooms and also speak on behalf of their friend when others ask questions or make nasty comments. Counselors can work with the school staff, parents and children to develop school-wide anti-bullying campaigns that teach children to counteract bullying and become allies for one another.
Preventing Isolation by Building Peer Support
The child and family may share their culture, religion and other signs of unity and cohesion. However, if the child’s exceptionality is not inherited, he or she may have the difficult experience of being the only member of his family with the anomaly. The child may benefit from the support of peers with the same disability to spend time with and compare experiences; or just be with colleagues who are already familiar with the disability and do not require explanations. Counselors can help parents find camps and support groups for both the family and child that include both children with disabilities and typical peers. Children need older, successful role models with disabilities who inspire them to persevere when they are discouraged. They need mentors, with and without disabilities, who challenge them to dream and make continual progress to accomplish their dreams.
Recommendations for Counselors
Counselors can be more aware of areas in which they can be quite helpful. Counselors can intervene in the medical system to provide newborns with disabilities and their parents with natural settings that allow relaxed time together to promote attachment and bonding. Counselors also can operate from a systemic, strengths-based model in order to best respect and support the child and family. Throughout the child’s development, counselors and families can collaborate to promote the development of age-appropriate skill acquisition, protective yet permeable personal boundaries, self-awareness, positive self-esteem, social skills, relationship development, the ability to be resilient in the face of stigma, and the opportunity to transition to the adult roles of employment, independent living, dating and family formation.
Systemic, Strengths-Based Counseling Models
Allen (1994) indicated that counselors and theorists operating from various individually oriented counseling perspectives assume that the origin of dysfunction and self-destructive behaviors in an individual is an internally defective self, psyche or physiological flaw. Hahn (1993) noted that the medical understanding of disability relates to organic pathology or impairment. Counselors who operate from a family systems model believe that difficult individual behavior is best understood as one piece of a larger interacting whole, such as the family or society, which is greater than the sum of its parts. The behaviors of individual members of the system are considered reflections of what is happening in the larger system. Rather than identifying the individual as a patient to be fixed, Nichols (1984) stated that the system should be explored to identify pathology in the interactions between people. Oliver (1996) did not believe that disabilities are intrinsically bad, and Linton (1998) reported that many people have disability pride. Disability pride refers to recognition that society is enriched by the distinctive positive voices, identities, thoughts, awareness, lifestyle examples and literature produced by individuals with disabilities. Seligman and Darling (2007) suggested that professionals who adopt a medical model of pathology may presume that the birth of a child with a disability will lead to maladaptive family functioning and therefore the implementation of intrusive, undesired interventions from service providers. I advocate the use of a collaborative, systemic, strengths-based counseling model due to the complex interconnected systems that make up the environment of children with disabilities and because it is more respectful of the child and family’s disability orientations and ability to prosper within a complicated context. It is erroneous, unkind and disrespectful to label a child who is capably using his resources to the best of his ability as unhealthy simply because he varies from the norm.
A systemic, strengths-based counseling model also respects the inherent worth of the child with a disability by not presuming that he or she is the identified patient. He or she is incredibly resilient in the face of daily challenges that would make many adults cower and yet gets up each day with renewed hope and moves forward into the future. Not only does this child face the same developmental tasks of childhood as his or her peers, but he or she must use additional thought, energy and time to develop and implement strategies to compensate for personal variations that may make the accomplishment of these tasks extremely difficult and time consuming.
One goal of counselors working with children with disabilities is to acknowledge the personhood and accomplishments of the children and their incredible inner fortitude, without categorizing them as more special than any other child. In a society where people are compared to a perceived norm, this child was either born with or acquired a variation that has been characterized as less than the norm, and labeled a disability, impairment, handicap or developmental disorder. The terms are pejorative; the connotations of the words just mentioned are as follows: not able, broken, defective, of lesser quality and developing incorrectly.
Counselors might also wonder how separation experiences impact attachment and bonding from the child’s perspective. Does the child experience feelings of abandonment and fear at a time when he or she lacks the ability to conceptualize or express them? A question for counselors and researchers to consider is whether there is an enduring impact from these experiences. Some parents initially reject the child with a disability or fear that they will not be able to manage the infant’s medical needs. Family members who have access to each other usually bond. Seligman and Darling (2007) reported that attachment can be difficult for some parents when aspects of the child’s disability interfere with the baby responding positively to his or her parents’ overtures.
Parents and counselors can help children with disabilities develop a healthy sense of self and determine what behavior is acceptable in others, and under what conditions. With so many people entering and leaving the child’s life, it is helpful for parents and counselors to help children understand different types of relationships and what to expect from them. They need to be protected from physical, sexual and emotional abuse and learn refusal skills in situations where their trust and cooperation are exploited.
Children with disabilities need self-awareness. Counselors have the opportunity to assist parents of young children with disabilities by suggesting that parents play games with their toddlers to help them learn body parts and their functions, including the terms that name their disability since it is also a natural part of them. It is not a defining part, but rather an aspect of themselves that they can become aware of and discuss, such as being adopted or having green eyes. Once the disability is assimilated into the family, family members go about the business of life; their child with a disability is just another member of the family.
Helping Children with Disabilities, Siblings and Parents Deal with Stigma
Siblings can help children with disabilities begin to interact differently with peers by accustoming them to the support, disagreements and jealously common between brothers and sisters. Children with disabilities encounter people within the larger community who may not be familiar with disabilities or the concept that disabilities occur among regular people. Children with disabilities and their siblings need to be prepared ahead of time for ableism so that they are not surprised or heartbroken by the reactions they receive from people outside their home. At home, no one stares at children with disabilities, mocks their disability-related differences or calls them negative names. Unfortunately, well-adjusted children with disabilities may encounter cruelty from other children whom they meet outside their homes and primary social networks. They need to know that the dysfunction in these interactions does not originate in them, but rather are due to a lack of knowledge in other people. Children, parents and siblings need help interacting with the larger society around issues of being different and educating others about their disabilities. Sibling groups can be helpful for children who sometimes feel torn between conflicting emotions about their sibling with a disability. Goffman (1963) said that family members of children with disabilities sometimes receive courtesy stigma when they are in public with their family member who has a disability. Children have reported feeling embarrassed by their sibling or guilty for excluding them or not defending them. At other times children have been shunned for standing up for their sibling. Siblings may sometimes be jealous of the extra attention their sibling’s disability requires, assist with their sibling’s care or operate independently.
The Importance of Being, While Also Acquiring Skills
Children need time for unstructured play to develop their imagination, gain independence, explore hobbies and experience leisure. They need opportunities to develop the daily living skills necessary to achieve autonomy by adulthood. In addition to learning to prepare food, clean, do laundry, manage money, monitor appointments and keep a home from dissolving into chaos, they will need to gradually take over the medical management of their disability if they intend to maintain their health. Children with disabilities and their families need extreme time-management skills in order to accomplish this herculean task. Counselors or life coaches can help families develop a long-term family vision. They also can help the child and family develop short-term and long-term goals for the child with the disability and problem-solving skills to overcome obstacles to their vision and goals. Parents and children may find it helpful to learn assertiveness skills so they can coordinate homework tasks assigned by support services and say no to excessive demands from numerous systems that add up to more than a 24-hour day.
Helping Adolescents Progress to Adulthood
When a disability is added to the list of difficulties Haley (1997) described, one may discover additional requirements for launching a young adult with disabilities. Some states require adolescents with disabilities to be evaluated before they can apply for a driver’s license, and their vehicles may need costly accommodations. Some people with disabilities are refused the opportunity to obtain a driver’s license and must make other plans for transportation. A young person with a disability needs a plan for vocational career development, job training, higher education or some means of financial support. Plans for independent living, a group home, or a nursing home, must be made prior to leaving the family home. Such plans often include meetings with a team to develop an individual education transition plan during secondary school, and meetings with rehabilitation counselors after high school to plan for college, vocational training or employment. Parents and students spend additional time and energy to acquire the documentation required to obtain these services. Counselors and life coaches can help the family members prioritize the various activities competing for their time, energy and financial resources. Professionals may encourage creativity around informal methods of achieving formal goals that do not require the child and family to expend more energy acquiring and maintaining the services than warranted by the potential relief obtained from the services.
Other Counseling Services
Counselors have so many tools to offer children with disabilities and their families throughout the family life cycle. They can offer concepts and techniques to deal with grief and anomie at the initial diagnosis of a disability, the chronic grief that emerges when a developmental milestone is missed, repeated encounters with ableism, or unsuccessful operations and physical therapy. Some childhood disabilities and chronic illnesses end in death at an early age. Counselors and hospice staff can help families prepare for this untimely departure.
Relaxation exercises can be helpful to families after a busy day of preoperative medical appointments, immediately prior to a surgery or while waiting for a surgery to end. A child having a painful medical procedure or frightening experience like Magnetic Resonance Imaging also can use relaxation as a method to cope. Cognitive therapy can help children and families reframe complex medical issues and disabilities from seemingly overwhelming tragedies to neutral manageable situations within their capabilities. Reframing can allow parents who regret missing work to spend hours in physician’s offices, X-ray labs or therapy appointments to see the experiences as valuable times—opportunities to really get to know the child and bond around lived experiences.
Learning to use communication skills allows parents to request that nonurgent operations and treatments be scheduled at times that do not interrupt other activities, such as birthdays, weddings and exciting field trips with classmates. Counselors can teach communication skills that can be used within the family to explore rigid roles that may not allow members the flexibility to effectively cope with the added chores that accompany a disability without sacrificing the real needs of any one family member.
Counselors can assist families and children in learning vital time-management and decision-making skills. They can help parents see that self-care is useful and that it is fine to ask for help from each other and use resources outside the family to relieve caregiver stress. Counselors can help families learn to develop a stress management plan that utilizes positive rather than negative coping skills during times of extreme stress. If families and children learn assertiveness skills, they may be able to release passivity or aggression. Counselors can help children and families reduce anxiety and depression throughout the lifespan, cultivate humor and gratitude, and juggle a variety of activities and emotions in the pursuit of a balanced life. Counselors may use their own creativity to generate original ideas for assisting children with disabilities and their families.
This article provides significant ideas to consider when working with individuals with disabilities and their families; there is much to learn through exploring relevant research and anecdotal information regarding disability awareness. An understanding of systemic theory is invaluable when working with the complex interconnecting systems that make up the environment of a child with a disability. Counselors may explore disability identities and orientations within the individual with a disability, the family and society. Professionals can consider interventions concerning identity formation in the person with a disability by promoting self-awareness, boundary development, and the understanding of and externalization of ableism for both the child and family members. Mental health professionals have the opportunity to confront the stigma associated with disabilities and service acquisition. Counselors can use reframing to normalize variations within students and decrease pity. They can partner with the child and his or her parents to educate the child’s classmates and their parents, school personnel, and community about the disability and inclusive practices that prevent social isolation and encourage interactions that disarm bullying and myths about people with disabilities. Counselors can offer practical help to children who may struggle with social skills, study skills, communication, assertiveness, stress management, spirituality, transitioning from childhood to adulthood, and the importance of being or experiencing one’s humanity rather than just accomplishing tasks. In addition to using the introductory ideas provided in the article, counselors are invited to creatively adapt additional theories and techniques to support children with disabilities and their families.
Conflict of Interest and Funding Disclosure
The author reported no conflict of
interest or funding contributions for
the development of this manuscript.
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Sherry Richmond-Frank, NCC, is the President of Creative Growth Counseling & Coaching, Inc. in Destrehan, LA. Correspondence may be addressed to Sherry Richmond-Frank, PO Box 1033, Destrehan, LA 70047, firstname.lastname@example.org.