By Marshall Raskind, Ph.D.
What's new in the world of research related to children with learning and attention difficulties? In this summary of current peer-reviewed research, Marshall Raskind, Ph.D., shares his expert perspective in practical terms for parents like you.
Although research in learning disabilities (LD) has grown considerably over the last several decades, few studies have captured the child's "inner experience" of living with an LD (i.e., the personal meaning of living with an LD as expressed directly by the children themselves). Some studies have attempted to reveal the "child's voice," however, they tend to have small numbers of participants and use interview techniques within artificial settings that do not foster free and uninhibited expression of the LD experience.
The Internet is emerging as a new venue for conducting research on the experience of children with LD. The fact that so many of our nation's youth now communicate with peers over the Internet creates a potential window from which to view the inner life of children with LD. This virtual, but authenticworld, where children exchange electronic communications on topics of personal significance and interest in what they consider to be a comfortable and safe environment, may provide researchers with a rich, new information source for capturing the children's voices and ultimately gaining a deeper understanding of what it is like to live with an LD.
Based on this line of thinking, my colleagues Dr. Malka Margalit and Dr. Eleanor Higgins and I launched an Internet-based study of LD from the "inside." We assumed that youth with LD would regard the Internet as a safe environment, allowing them to present and share the personal meaning of their LD. Our assumption evolved from previous research 1, 2 that indicated people using the Internet are inclined to reveal their "true selves" online and often disclose more about themselves than in face-to-face "real world" interactions. We believed that by studying the online messages of children and teens with LD that we could develop a deeper and richer understanding of their thoughts, feelings, and attitudes - both positive and negative. Further, we thought the study of their online communications would provide a portal from which to view their hopes, fears, needs, joys, as well as difficulties and frustrations.
Our research3 examined children's presentations of the "LD experience" as expressed in their online messages written on a pre-existing public website designed for children with learning and attention problems (SparkTop.org™). We reviewed and analyzed 4,903 email messages sent from the 164 self-identified LD participants, ages 9-18, to other users on the site over a period of approximately eighteen months. These messages had been sent to other self-identified LD participants, registered users who did not "identify" themselves as having LD, and guests. Messages sent to four animated fictionalized characters were also reviewed. These fictionalized characters are based on three actual teenagers ("teen mentors") who have LD, as well as an adult doctoral-level "LD expert."
Six major themes emerged from the analysis of children's messages:
Next we'll explore each of these themes in detail.
Many of the children in this study identified themselves, in their email messages, as individuals who "belonged to a group" of children with LD. For example, they wrote questions and statements such as:
However, "LD identification" was only part of how they presented and defined themselves. They also presented their overall identity by providing information about their age, gender, physical appearance, families, and personal preferences regarding youth culture (e.g., teen idols, music, movies, TV, clothing). The children seem to share the same global youth culture documented in the United States4, 5 and in other countries, such as Israel6. Thus, side by side with descriptors of self-identity, they provided distinctive information about their LD.
It appears that the Internet served as a safe virtual environment, enabling children with LD to explore and express the totality of their identity. Furthermore, the feeling that they are not alone in experiencing difficulties - because they belong to a group of children who share similar difficulties - was regarded by several children as a source of relief from their struggles.
The information the children provided about their academic difficulties was varied.
The difficulties described by the children reflect the full range of academic problems described in the research literature (e.g., reading, writing, spelling, and math). However, from these self-initiated messages we are able to understand more about the personal nature of their academic struggles and concerns, in addition to what we may learn from a purely quantitative analysis of their academic deficits.
Although expressions varied, the majority of children who wrote messages disclosed emotional attitudes towards their LD, writing statements such as:
Some children noted that having LD affects their self-worth:
Several children also disclosed their loneliness, with such comments as, "Sometimes it feels like I am the only one with an LD."
Again, the children's messages are consistent with prior research in LD, in these instances, of the emotional and psychological difficulties encountered by many children with LD7, 8, 9, 10, 11. The messages are vivid expressions of emotional distress, including feelings of sadness, diminished self-worth, loneliness, and fear, apparently resulting from their academic struggles, social rejection, and even family stress.
As reported in the previous research, the children's messages in this study also indicate social difficulties. Many viewed their social exclusion as part of their LD identity. They reported rejection with such comments as:
Some wrote that they avoid disclosing their LD to their peers, fearful of sharing their LD identity, writing:
Their need to refrain from disclosing their LD to their peers reflects their identity struggle, which demands great personal energy. The contrast between the children's attempt to hold back knowledge about their LD to peers and the self-disclosure in their online messages reveals the importance of the Internet as an outlet for anxiety-provoking situations. It appeared that these children shared their negative experiences on the Internet in an open and detailed manner, something that many of them were not able to do in face-to-face interactions.
The vast majority of children wrote messages asking for help. They often complained that they were distressed and not getting the help they needed from friends, family members, and teachers. However, many children appeared to trust the virtual characters (teen mentors, "LD Expert") as well as other children on the website and were more than willing to share their difficulties and seek the advice of those with whom they identified (e.g., "some people don't understand me and I hope you do").
They asked for advice in areas such as:
Children showed appreciation to those offering advice and described how it helped them; for example, "I really like all of your advice and your advice is better than anyone else."
The children's requests for help over the Internet were particularly intriguing in light of previous research indicating the importance of seeking and accepting help from others in achieving positive life outcomes for people with LD12.
Research suggests the importance of people with LD recognizing their special talents, and "reframing" the LD experience into something positive if they are to achieve successful life outcomes13. However, only a few children in our study made positive statements regarding their LD, or challenged negative attitudes toward their LD ("What is bad about having an LD?") or about educational alternatives such as homeschooling: ("It's nice to be home schooled because I have an LD.") In addition to these positive expressions being rare, they also appeared somewhat subdued. In sum, none of the messages could be considered strong or passionate positive emotional reactions to living with an LD. The lack of positive expressions of LD was a disappointment to us considering their relationship to positive life outcomes.
This was the first study to show self-disclosure behavior and the sharing of "inner life" on the Internet by children with self-identified LD through self-initiated messages. It appeared in several instances that the children were more willing to self-disclose through online messages than in face-to-face, "real-world" interactions. Statements that illustrate this include:
This finding is consistent with past research which indicates that many people are more likely to self-disclose online than they do in real world interactions. This has special importance for a population of children who often have social difficulties and are prone to social rejection, as the virtual environment may offer a social context that does not accentuate their deficits, and provides a place where they are more likely to experience positive interactions with others.
Results of the study also corroborate existing research on the challenges experienced by children with LD, including academic difficulties, emotional problems, and social distress14, 15, 16, 17 as well as other qualitative studies of children18, 19, 20 and adults21, 22, 13, 23; 24 aimed at capturing the insider perspective. We found the expressions of social distress particularly disconcerting considering that after decades of knowing that children with LD experience social rejection, they continue to face the same kinds of social isolation and victimization today.
Most of the children also wrote messages asking for help from both their peers and the virtual characters on the site. The importance of helpful resources for students with LD has been established in earlier studies 25. In our study, the children's reactions generally indicated that they were satisfied with the response to their requests for help and advice. Considering that several children appeared hesitant to ask for help in the "real" world, and were afraid of their peers' reactions, the virtual world of the Internet might provide an important alternative, or complement, to assisting and supporting children with LD. The potential of the Internet as a support system is particularly important in light of research showing that individuals with LD who are willing to ask for and receive help from others are more likely to attain life success.
Beyond the disclosure of difficulties and LD identities, the online messages illustrate that the participating children shared age-appropriate youth culture (e.g., music, fashion, movies, "romance")4 and that their LD's represented only part of their world. This is a positive finding as research has indicated that the ability to compartmentalize one's LD, that is, to see it as only one aspect of one's self and not be overly defined by it, is associated with life success21. Future studies may do well to explore how participating in popular youth culture may serve to empower, normalize, and promote compartmentalization and self-awareness in children with LD. Individuals with LD who are able to compartmentalize are more likely to develop awareness of their special talents and abilities, while accepting their limitations. An awareness of one's strengths and the settings in which to foster them has also been equated with positive life outcomes for people with LD21, 13, 26.
In summary, the results of this study provide in-depth, authentic, first-hand accounts of children's day-to-day experiences of living with LD. The study enabled us to capture the children's inner voices through self-initiated communication. It also demonstrates the current and potential benefit of the Internet for enabling new and wider social connections for coping with distress by sharing concerns and obtaining social support. Paradoxically, Internet sites may provide a sense of relatedness and closeness, as well as encourage self-disclosure despite the actual physical distance that exists between users.