Dyslexia Projects Past to Present
Early Origins (2006)
Our project began with an extensive review of research literature on adults with dyslexia.
Purpose: The purpose of the review was to gain an understanding of “what is known” about social and emotional experiences of this group. The purpose of our research was to deepen our understanding of adults’ experiences with dyslexia as understood by adults with dyslexia.
Objective: To understand the experiences associated with being an adult with dyslexia.
Method: 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.
Results: In comparison to childhood, there is far less known about how dyslexia affects adulthood. For example, of approximately 650 studies retrieved, only 29 (4.4%) was concerned with the social and emotional experiences of adults with dyslexia. Our study revealed that dyslexia is about the whole person and every facet of their life—education, employment, leisure relationships, and socio-emotional well-being.
Findings: Despite common myths regarding dyslexia, children with dyslexia become adults with dyslexia.
Phase I and II: Psychosocial Experiences Associated with Dyslexia (2006-2008)
Participants: 39 adults ages 25-66 described their lives with dyslexia in terms of nine themes one may experience:
1. Organizational Skills for Success: “I find ways to make life easier with dyslexia easier.”
2. Finding Success: “It’s important to work with your strengths.”
3. A Good Support System Makes the Difference: “Parental support can make a difference in self-esteem.”
4. On being Overwhelmed: “Coping with dyslexia can lead to exhaustion.”
5. Emotional Downside: “Even as an adult I experience sadness about my dyslexia.”
6. Why Can’t They See It? “Other people don’t see the amount of hard work that someone with dyslexia puts forth to accomplish the same task.”
7. Pain, Hurt, and Embarrassment from Past to Present: “As a child with dyslexia, school experiences can be hurtful, embarrassing, and scary.”
8. Fear of Disclosure. “I never liked disclosing that I have dyslexia.”
9. Moving Forward. “Because it is difficult to see dyslexia, it is often difficult for some people to recognize it…it’s a silent disability.”
For further information regarding Phase I and Phase II, please refer to “Our Research” page and view manuscript: #3, #1, and #2.
Phase III: Overview (2010-2013)
Findings from Phase I and II: We came to realize that participants had much more to say about their personal experiences with dyslexia. This led us to further explore the life experiences of adults with dyslexia through the use of a first-of-its-kind online survey.
Summary of Recent Publications
Perceived Family Support, Emotional Experience with Dyslexia, and Self-Esteem
Objective: This study attempted to understand the role emotional experience with dyslexia plays in the relationship between perceived family support and self-esteem in adulthood.
•Adults with high self-esteem appear to experience greater mental and physical health and a more satisfying life than those adults with low self-esteem. •Emotional experience with dyslexia is conceptualized as a host of emotions
inherent in living with dyslexia including frustration, sadness, depression,
anxiety, exhaustion, self-consciousness, and traumatic memories of negative
early school experiences.
•Early adulthood is an emotionally vulnerable period for adults with dyslexia. •Family support appears to play a pivotal role in early and middle adulthood.
When adults’ emotional experience with dyslexia is less poignant in their
lives via the support received by family (e.g., tangible and emotional support), self-esteem is directly enhanced.
For more information please visit the “Our Research” page and view manuscript #4.
Considering the role of traditional and private/specialist schools: Do school experiences impact the emotional well-being and self-esteem of adults with dyslexia?
Purpose: Investigate whether attendance at a private school in childhood/adolescence positively affects emotional experience with dyslexia and self-esteem into adulthood.
Participants: The sample consisted of 224 adults with dyslexia. Of these, 129 were alumni of traditional schools while 95 were alumni of a private school exclusively for children/adolescents with dyslexia.
•Traditional school alumni were significantly more likely to have a current
diagnosis of anxiety/depression compared to private school alumni.
•Private school alumni reported significantly higher levels of perceived family support, less emotional distress with regard to their dyslexia, and had significantly higher levels of self-esteem. •Private school alumni tended to have higher self-esteem because private school attendance directly decreased negative emotional experience with dyslexia. •The traditional school environment served as a risk factor by exacerbating
negative emotional experience with dyslexia, which in turn negatively affected self-esteem.
•Private school settings served a protector or buffering role in the development of negative emotional experience with dyslexia, thereby enhancing self-esteem.
Conclusion: When adults’ emotional experience with dyslexia is less poignant in their lives via the support received from private school settings, self-esteem is directly enhanced well into adulthood.
For more information please visit the “Our Research” page and view manuscript #5.
Current Phase IV
Procedure: We included the following general open-ended question at the end of the survey:
•Please share any final comments, thoughts, or feelings about any aspect of this survey or topics covered.
Findings: The question yielded a large amount of rich data that underscored the depth of individual experiences with dyslexia. One experience that stood out was the phenomenon of intergenerational dyslexia. Many of the participants spoke of the trials and tribulations inherent in having dyslexia while at the same time raising children with dyslexia. This finding led us to our current project which seeks to more fully understand dyslexia through the generations.