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Phase 1 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.

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.

We 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.

The individual and focus group interviews were audio-recorded 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.
  • Perseverance and hard work are necessary to be successful.
  • Parental support can make a difference in self-esteem.
  • 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.


Below are a few images that were created during Phase I:


Continuing from Phase One, each of the 75 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.

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.

Based on the analysis and feedback from participants, a 9 life themes from participant experiences were unanimously selected:

    1. Organization Skills for Success
    2. Finding Success
    3. A Good Support System Makes the Difference
    4. On Being Overwhelmed
    5. Emotional Downside
    6. Why Can’t They See It?
    7. Pain, Hurt, Embarrassment from Past to Present
    8. Fear of Disclosure
    9. Moving Forward

In 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 by 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.

Lor, 2018