How it Began: Adults with Dyslexia Project SummaryThis study began with an extensive and rigorous review of the research literature on adults with dyslexia. The purpose of the review was to gain an understanding of “what is known” about the psychosocial (social and emotional) experiences of this group. According to Shaywitz (1998) dyslexia is among the most common of learning disabilities with prevalence ranging from 5%-12%. Due to the high occurrence of dyslexia, it is important to understand the experiences associated with being an adult with dyslexia. It is important to understand the psychosocial dynamics and effects of being dyslexic throughout the lifespan. Of approximately 650 studies retrieved, only 29 (4.4%) was concerned with the social and emotional experiences of adults with dyslexia. Put differently, more is known about the etiological, neurological, and instructional aspects than the life experiences of adults with dyslexia. As the empirical literature concerning the psychosocial experiences of adults with dyslexia is in its beginning stage, studies that explored and depicted adults’ personal accounts of their experience with dyslexia became an influential source of inspiration for our research. The findings from these studies are particularly compelling because they advance unique participant-driven conceptualizations of the psychosocial experiences of this group. These conceptualizations complement quantitative research by providing for a richer, more in-depth understanding of adults’ experiences with dyslexia. However, the majority of the research on the psychosocial experiences of adults with dyslexia has been driven by the world view of professionals. We believe that by using the adults’ world views in organizing, naming, and conceptualizing their experiences with dyslexia provides a more accurate reflection of what it’s like to live with dyslexia as an adult.
The purpose of our research was to deepen our understanding of adults’ experiences with dyslexia as understood by adults with dyslexia. It is assumed that a model reflecting human behavior in the social environment must validate and substantiate the realities as experienced by people with dyslexia and those within his or her environment. Put differently, a model must tell their stories, their realities as perceived by themselves. Using their own words, we attempted in this study to select, coalesce, organize, and depict the experiences of adults with dyslexia by using an alternative methodological approach called concept mapping.
What is Concept Mapping? Developed by Trochim (1989), concept mapping is a mixed method approach that involves participants in every stage of a project. Concept mapping combines the inherent strengths of qualitative (words, descriptions, narratives) and quantitative (numbers, statistics) analyses utilizing a structured process focused on a topic of interest. It involves input from participants which seeks to yield an interpretable pictorial view of their ideas and concepts and how these are interrelated (Kane & Trochim, 2007). The intent underpinning concept mapping is fits with participatory research methodologies that emphasize empowerment (Petrucci & Quinlan, 2007) and, the direct involvement of people with learning disabilities in social science research (Aldridge, 2007).
Concept Mapping Phase I: Generation of Adults’ Experiences with DyslexiaWe used participant generated photography with individual participants and a collage creation during each of the focus groups as a method for participants to tell their own stories using a combination of visual, kinesthetic, and verbal language. Photography and art are mediums that are sensitive to the unique needs and strengths of adults with dyslexia.
Photographs were used with the participants who were individually interviewed. The participants were asked to “take 12 or more pictures of anything that would help people understand your dyslexia” and to “take part in a two hour interview at a time that is convenient for you.” Discussing the photographs often led to unexpected information or deeper discussions than what the particular picture showed. An art project was used in the focus groups to assist in the process of describing what it is like to be an adult with dyslexia. Participants were divided into small groups of three and given a variety of magazines, scissors, tape, glue, markers, crayons, and construction paper. Each group was asked to create a collage that would describe their experiences with dyslexia as an adult. Click on "How it Began" to view some of the collages that were created by the focus group participants. The individual and focus group interviews were audio-recoded and transcribed verbatim. From the total number of statements generated by the participants, a total of 75 statements that represented adults’ experiences with dyslexia were ultimately produced. Member checking was used as a way to ensure that the statements accurately reflected the views of the participants. Some of these statements include the following:
•I find ways to make life with dyslexia easier.
I find ways to make life with dyslexia easier.•Perseverance and hard work are necessary to be successful.
Perseverance and hard work are necessary to be successful.•Parental support can make a difference in self-esteem.
Parental support can make a difference in self-esteem.•Coping with dyslexia can lead to exhaustion.
Coping with dyslexia can lead to exhaustion.•Other people don't see the amount of hard work that someone with dyslexia puts forth to accomplish the same task.
Other people don't see the amount of hard work that someone with dyslexia puts forth to accomplish the same task.Concept Mapping Phase II: Sorting and Rating of Adults’ Experiences with DyslexiaEach of the75 statements was printed on a card; each card denoted one participant-identified statement/experience related to being an adult with dyslexia. Participants were asked to group the statements “into piles that make sense and fit together.” Each participant decided how many piles to create and what each category (or concept) contained. Next, participants were asked to give each pile a phrase that they believed most accurately represented the statements in it and wrote the phase on the outside of unmarked envelope. Click above to view the sorting diagram Participants also responded to a questionnaire composed of the 75 items. Participants rated on a 7-point Likert-type scale ranging from 1 (strongly disagree) to 7 (strongly agree) how well each item described their personal experience with dyslexia. The purpose of the rating task was to facilitate identification of the most and least common experiences of dyslexia within the participant group.
DJohanson, 2008 Research Findings Based on the analysis and feedback from participants, a 9-cluster solution of participant experiences was unanimously selected. The 9 distinct cluster themes are: •Organization Skills for Success
Organization Skills for Success•Finding Success
Finding Success•A Good Support System Makes the Difference
A Good Support System Makes the Difference•On Being Overwhelmed
On Being Overwhelmed •Emotional Downside
Emotional Downside•Why Can’t They See It?
Why Can’t They See It?•Pain, Hurt, Embarrassment from Past to Present
Pain, Hurt, Embarrassment from Past to Present•Fear of Disclosure
Fear of Disclosure•Moving Forward
Moving ForwardIn short, the dyslexia concept map produced in this study is very compelling when compared to many other studies of similar purpose. Despite participants of different gender, ethnicity, geographic regions, and age, the social, emotional, and behavioral experiences with dyslexia are viewed and lived similarly across participants. Put differently, the experience is real, authentic, and genuine rather than fuzzy, amorphous, or incoherent. The study underscores that dyslexia is not something in your head, but is a day-to-day reality—both real and powerful and does not go away.
If you would like additional information about the concept mapping phase of the study, please click on the following links for two published journal articles:
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