1-7 Understanding the lived experience of ADHD: A holistic approach to understanding ADHD and implications for treatment
Childhood Attention-Deficit/Hyperactivity Disorder (ADHD) is defined as inattention with conceptual features of disorganization and dysexecutive syndrome and hyperactivity/impulsivity with conceptual features of abnormal reward discounting, social disinhibition and intrusiveness, and emotional dysregulation (Frick & Nigg, 2011; Halperin, Marks, & Schulz, 2008). It is currently among the most prevalent of childhood psychiatric disorders, accounting for 30-50% of all mental health referrals for children (Halperin, Marks, & Schulz, 2008). The symptoms characteristic of ADHD have been discussed since the early 1900s, though the diagnostic label has changed over the years (Barbetti, 2003; Bitar, 2004). Despite its diagnostic prevalence, ADHD is surrounded by controversy, and even for diagnosticians and researchers it remains poorly understood (Barbetti, 2003; Timimi & Radcliffe, 2005). There is general agreement among diagnosing medical professionals that ADHD represents a neurobiological condition rather than being solely a result of environmental conditions, though it is acknowledged that environmental conditions may impact symptom expression (Halperin, Marks, & Schulz, 2008; Timimi & Radcliffe, 2005).
Actual estimates of prevalence vary widely, affecting anywhere from 0.5-26% of school aged children (Halperin, Marks, & Schulz, 2008; Timimi & Radcliffe, 2005). The behavioral symptoms that are connected to the diagnosis of ADHD are inattention, hyperactivity, and impulsivity. These behavioral symptoms are separated from “age appropriate” levels of short attention span, excessive activity, and underdeveloped impulse control by virtue of their extremity, though extremity of course has continued to be a somewhat subjective measurement. The four symptoms originally listed in the DSM-II had, by the publication of the DSM-IV, increased to eighteen (Barbetti, 2003). As Barbetti (2003) highlights, one’s definition of “inattention,” “hyperactivity,” and “impulsivity” are socially and culturally reliant. Current discourses surrounding ADHD (both scientific and otherwise) center on issues of control, the changes in family structure, increasing engagement with media (television and video games), effects of environmental pollutants, and chemical or physical abnormalities in the brain (Barbetti, 2003; Buitelaar & Rothenberg, 2004; Timimi & Radcliffe, 2005). There are a number of critiques regarding the diagnosis and treatment of ADHD in Western culture (primarily focusing on the United States and to some extent the United Kingdom). These critiques tend to focus on accuracy of research, accuracy of diagnosis, involvement of the pharmaceutical companies, and social and cultural contexts (Buitelaar & Rothenberg, 2004; Timimi & Radcliffe, 2005). At present, extensive research and discussion centers on the diagnostic validity of ADHD. While this is unquestionably an important pedagogical avenue of exploration, the dichotomous dialogue of disorder versus cultural construct seems curiously out of touch with the “events on the ground.” As the debate continues, up to a quarter of school-aged children are diagnosed with and treated for ADHD, primarily by use of pharmaceutical stimulants, leaving those on the opposing side calling foul to an empty audience.
What is curiously lacking from the conversation is any real focus on the experience of ADHD itself. Layperson autobiographies abound, but few professionals seem to expend much energy reading them, considering their content, or figuring out alternative or supplemental treatments that might address the distress described. As a beginning therapist and researcher, the literature regarding the diagnostic validity of ADHD seems curiously beside the point. This is not at all to suggest that the issue is of no consequence, but after 100 years of debate on the issue, we remain without widespread consensus. Rather than adding to the bulk of the conversation, it seems necessary to approach it from another angle altogether. While it seems likely that pharmaceutical stimulants are here to stay (at least in the near future) as a treatment for ADHD, little work has focused on how to address the child’s lived experience of their ADHD and the way in which their surroundings add to or decrease their ADHD-type behaviors.
In order to gain a clearer understanding of the lived experience of ADHD, I chose to examine narratives taken from two books, one an autobiography and self-help book written by a teenager with ADHD for other children and teenagers with ADHD, Blake E.S. Taylor’s ADHD & Me (2007). The other, a dissertation written at Duquesne University by Patricia Bitar, The Self-Perceptions of Adolescents with Attention Deficit Hyperactivity Disorder, which utilized statements that adolescents with ADHD had made regarding a number of different topics. By exploring these narratives, I hope to come closer to understanding of what it is like to be in the lived physical space of a child or adolescent with ADHD, in order to develop a different kind of understanding of the disorder, the diagnosis, and its impact on the children whose lives it has touched.
The Sensory Experience
What is primarily and obviously evident in the things that children and adolescents with ADHD say about their emotional and physical experiences is the degree to which over-stimulation can easily drive them to the brink. The stimulation can come in many forms, but these children and adolescents understand themselves as less able than their same-age peers to “block out” the white noise and the visual distractions. In a powerful and evocative passage, Taylor (2007) describes the experience of walking into a classroom in order to take an exam, and being sensorially overwhelmed by the noises and images surrounding him.
I enter the classroom . . . and am shocked by the explosion of color and artwork that decorates the room. It’s ablaze with color. Normally, I would be content to be in a room decorated with art, but this is my final exam . . . I desperately need to be able to concentrate solely on writing the paper. I sit next to a window for fresh air . . . Since the day is relatively pleasant, a hundred or so elementary school children from the lower school are out in the playground five stories below . . . They scream and yell . . . The window is open, and the shrill noise pierces my ears . . . Bells, whistles, screams, people running up and down the stairs. After ten minutes of trying to concentrate and trying not to be distracted by the noise the kids are making outside, I’ve written only one sentence . . . My classmates have simply tuned out the noise . . . I try to remember . . . But it’s difficult, because the noise of the kids outside stays in the forefront of my mind and hinders my ability to think. I become frustrated. In an attempt to calm myself, I look at the walls and intricate details of the artwork . . . I envy the freedom that the children have outside . . . My mind is flitting around uncontrollably (p. 9-11).
The emotional impact that his surroundings have on him is conveyed clearly in Taylor’s description of this experience. Taylor describes his attempts to manage the impact that the visual stimulation has on him: He sits by a window towards the back of the classroom, hoping that the fresh air will calm his mind. This choice proves no better, as the auditory impact comes into play. Notably, Taylor’s description of the visual and auditory stimulation do not position them as negative aspects of his environment. Instead, the issue he is struggling with is an extreme openness to his surroundings. Taylor does not just hear, he hears everything. He does not just see the art on the walls; his mind is filled with the images.
Here, Taylor positions himself as essentially different from his peers, highlighting the way in which his classmates simply “tune out” the sensory stimulation. In describing how these sensory experiences impact him differently from his classmates, Taylor (2007) describes the physical experience of this openness. He writes:
“The loud, sharp noises hurt my ears, unlike any other child’s in the classroom. The other children simply ignore the noises or don’t hear the shrieks. I cannot simply ignore the noises; they are like needles piercing my eardrums, and they keep me from concentrating or thinking clearly” (p. 109). Taylor’s depiction is an extremely painful one and he emphasizes how these sensory experiences come to block out or cover over his attempts to focus on a single thing.
Through this description, Taylor conveys the discomfort of his experience in a room full of loud children. When one reflects on difficulty children diagnosed with ADHD have with other children or in large classroom settings, it is easy to see how Taylor’s experience could translate to a broader context beyond his particular experience. How could one focus cooperate or join in the play of other young children if the very noise created by that play produced such physical pain? In the same vein, it can be understood how such experiences could interfere with a child’s ability to focus or engage in a classroom setting. The conversation around treating ADHD, however, continuously seems to skirt around this issue of perception.
Minkowski (1970) suggests that most of us are able to see and experience what goes on around us without being directly impacted or “touched” by it. Minkowski suggests that we are able to separate ourselves from our environments to a certain degree, perhaps noticing what happens, but then filter it out what we do not need to take in. “[T]here is a distance which separates me from life or, rather, unites me with life. There is always free space in front of me in which my activity can develop. I feel at ease, I feel free, in this space which I have before me” [italics in text] (Minkowski, 1970, p. 403). It seems possible that for children and adolescents with ADHD, this is not the case—instead, there is no space between their minds and what goes on around them. They may lack that free space in which their activity can develop, and therefore there is no ease to their activity. Everything around them is happening to them and happening immediately.
Disconnection from the Physical Body
Adding impact to his narrative, Taylor describes the lack of control that he has over his thoughts as a result of these outside distractions. “When distraction – and therefore the inability to concentrate – occurs,” he writes, “I feel as if my mind were a television with the channel changing uncontrollably” (Taylor, 2007, p. 16). What jumps out here is Taylor’s sense of powerlessness in relation to his situation. When distraction occurs, he is left vulnerable with few tools to cope. This theme appears over and over again in his narrative, and though he has ways of fending off such distractions along with suggestions for other adolescents about how to do so as well, in general these suggestions are limited to having a healthy lifestyle and, above all, faithfully taking one’s prescription medication (Taylor, 2007). In few places is Taylor able to illustrate a time when an adult (besides one of his parents) stepped in to assist him in creating a space where these distractions were less likely to occur.
This leaves Taylor with the understandable feeling of disconnection from his mind and body. When children and adolescents are offered no other resource but medication, when our culture insists that they must adapt to the lives we have to offer them rather than working to adapt the space to their needs, it is easy to imagine how they might begin to lose a sense of control and familiarity with their own processes. Taylor seems remarkably familiar with his distraction, discomfort, and the results of this distraction, but it serves only to make him see how different he is from everyone else: He understands his mind “like a television gone wild” rather than like one that is over-stimulated. This lack of agency over one’s processes and the idea that there is “nothing they can do about them,” highlights the ways in which adolescents with ADHD feel separate from their body and speech.
This feeling or belief seems to be encouraged in some ways, as children and adolescents are often told that they have no other choices, that this is “the way it is” if they do not take their medication. Taylor (2007), throughout his narrative, highlights instances of his “misbehavior” that would not have occurred (or would have been less likely to occur) had he taken his medication. While it may very well be true that taking medication helps Taylor feel in more control of such situations, the ways in which the discourse around medication is framed seems particularly disempowering for the children and adolescents to whom it is meant to apply. Bitar (2004) shares a narrative in which the adolescent says, “’Off of pills I feel really weird because I’m, like, so hyper and I just say stuff that I don’t really want to say, like, while I’m out with friends and, like, I do something really stupid. Then later on I feel embarrassed because of it, because it’s like I’m practically drunk, ‘cause I don’t know what I’m doing, I’m just doing it’” (p. 103). From Taylor’s (2007) narrative, one can imagine how uncomfortable an individual might feel without the buffer that medication provides, yet it is striking that this adolescent speaks about himself off of medication as almost an alien being. There is a certain way in which this individual seems to disassociate himself from what happens when he is not taking medication, implicitly suggesting that it is the malfunctioning mind or body that is responsible for his actions and not the individual at all!
We find ourselves turning back to Taylor’s (2007) original narrative, with his feelings of helplessness, hopelessness, and a lack of self-control. Reading this narrative, a child or adolescent could feel incapable of self-governance: after all, what is the point? In one of the earliest chapters of his book, Taylor looks back and remembers an experience when, as a young child, he had his nanny to tie him to a chair in order to sit and eat dinner. He writes: “I give in and relax my body . . . With the help of Gloria and her bungee cord, I am actually able to sit still long enough to finish dinner” (p.2). Taylor only feels able to let go of attempting control when it is explicitly taken away from him, when he can no longer even struggle to engage with his environment “appropriately.” But what is the message that this provides for Taylor? It reifies the assumption that he is “out of control”—that his body and mind are malfunctioning and that outside intervention is required in order to re-align his body with what is expected of it.
Activity as a Means of Control
In considering Taylor’s (2007) experience of his physical surroundings and the narrative that Bitar (2004) presents, it becomes clear how disjointed and uncomfortable most environments must be for children and adolescents with ADHD. The consistent necessity of engaging in traditional settings without any substantive assistance must tax what inner resources of control and stability these individuals are able to muster. Benswanger (1979) suggests that two significant factors go into a child’s experience of their lived space and their behavior within it. These two are “attuned space” and “activity.” Benswanger (1979) says of attuned space, “The child’s sense of comfort, familiarity and security invariably affects his perceptions of a place and his behavior there” (p. 116-117). If this were true, consider what the impact of the evident discomfort and lack of security that Taylor (2007) and Bitar (2004) describe would be. Children and adolescents with ADHD are unlikely to consider academic or social settings as comfortable and secure, and while they may be familiar settings, it is probably a familiarity bred of dread.
Given Benswanger’s (1979) proposal that comfort and security are two factors that influence a child’s behavior in a space, how might a feeling of discomfort become manifest in children with ADHD? Benswanger’s description of “activity” provides a clue:
Activity is made manifest in the ways a subject directs himself to his surroundings, the ways in which he encounters and shapes his world. Activity implies movement, which in turn implies a subject who in intentionally directed to the world . . . Through his activities in space, the child learns to coordinate his sensory and motor functions and organizes them in a coherent unity in these early experiences, there is already a continuity of meaning between what is seen and heard, between touch, vision, and movement (p. 117).
This passage contains much to consider, but, to begin at a basic level: If activity might be an individual’s way of taking up—encountering and shaping—his or her surroundings, what might this mean for children and adolescents with ADHD?
We know that adolescents with ADHD are, at least to some degree, frequently uncomfortable in their surroundings. From their narratives, we can deduce that they often feel helpless and overwhelmed by the effects that their surroundings have on them. If “activity implies movement,” what kinds of movement are common for children or adolescents with ADHD (Benswanger, 1979, p.117)? They are frequently accused of disruption or hyperactivity, particularly in social or academic contexts. If a child’s “activities in space are an attempt to coordinate his sensory and motor experiences,” it is easy to understand how a child might take up his or her over-stimulating environment and make sense of it through an excess of activity (Benswanger, 1979, p. 117). If the child experiences the environment as uncomfortable, discordant, and disruptive of his or her thought process, it seems only natural that his or her response to this experience would be disruptive or antagonistic.
Treatment Considerations and Conclusion
Some research has shown that while children with ADHD tend to exhibit ADHD-type behaviors both at home and at school, that a greater degree and range of behaviors can be observed in the school setting (Mares, McLuckie, Schwartz, & Saini, 2007). These findings suggest that while a child with ADHD may be having difficulty across multiple areas of his or her life, that particular situations exacerbate or increase the frequency of the appearance of “problematic behaviors.” While a few select alternative or supportive therapies such behavioral therapy, tutoring, and parenting workshops are used with some regularity to treat children with ADHD, such interventions miss the chance to address aspects of the children’s environments that may be contributing to or exacerbating their ADHD behaviors. Some schools do offer assistance for children with ADHD, but families are frequently under-informed about the options available for enrichment or special attention and are therefore less able to advocate for their children receiving such school-based assistance.
While some tentative research has begun to examine how and what behaviors differ between home and school settings, it seems clear that there are larger questions we can and should ask about the needs of a child with ADHD that may not be met in the average school or home environment. A number of aspects might be at play in a child’s experience of school—from class size to the teacher’s level of energy and teaching style and even perhaps the shape and decoration of the classroom. While some may argue that making changes to the school day and physical environment simply to cater to a few children with ADHD is unnecessary, the increasing number of children diagnosed with and treated for ADHD seems to suggest that ADHD is likely to become an even larger problem over time, whatever the cause or diagnostic validity. The descriptions of the emotional and physical impact of sensory stimuli suggests that more should be done in creating academic, social, and living spaces that assist the child in feeling comfortable and helping them to focus rather than decreasing their ability to do so.
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