Frequency and diagnostic criteria for nonverbal learning disabilities in a general learning disability school cohort

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5
Thalamus, Volume 24, Number 1
Fall 2006, Volume 24, Number 1
Thalamus
Conducting Research on the Internet: Ethical Issues and
Opportunities for the Field of Learning Disabilities
Marshall Raskind and Malka Margalit...................................................6
Frequency and Diagnostic Criteria for Nonverbal Learning
Disabilities in a General Learning Disability School Cohort
William Solodow, Sandra V. Sandy, Fern Leventhal, Scott Beszylko,
Margaret Jo Shepherd, Jonathan Cohen, Shoshana Goldman,
Richard Perry, Jennifer J. Chang and Ruth Nass.........................................17
Interview with Peter Rosenberger, M.D.
Janette Klingner.................................................................................34
William M. Cruickshank Memorial Lecture
Loneliness, the Salutogenic Paradigm and Learning
Disabilities: Current Research, Future Directions, and
Interventional Implications
Malka Margalit..........................................................................................38
Acceptable Loss and Potential Gain:
Self-Disclosure and Adults with Learning Disabilities
Paul J. Gerber and Lynda A. Price.............................................................49

6Thalamus, Fall 2006
The emergence of the Internet has
had a profound effect upon society
and the way many of us manage
our daily lives. It has provided
new ways of communicating, con-
ducting business, socializing, and
gathering information. The vast
amount of social and behavioral in-
formation on the Internet has also
attracted the interest of research-
ers from a variety of disciplines
who have recognized the potential
power of the Internet as a medium
for conducting scientific-based
research (Frankel & Siang, 1999;
Skitka & Sargis, 2006). Over the
last decade, this recognition has
led to the rapidly expanding use of
the Internet to perform research in
the behavioral sciences (Birnbaum,
2001, 2004).
The overall attractiveness of con-
ducting research via the Internet
is clear: It enables social science
researchers to obtain large, het-
erogeneous, international samples,
and contact difficult to reach popu-
lations. Rich samples of human be-
havior can be mined from real-time
online communication (e.g., chat
rooms) and archived data (Flicker,
Haans, & Skinner, 2004). In addi-
tion, use of the Internet may lower
the costs and increase the speed
and efficiency of data collection
(Kraut et al., 2004).
Despite its attractiveness, on-
line research raises a number of
concerns regarding quality (e.g.,
researcher control, sample bias)
and the treatment of research par-
ticipants (Association of Internet
Researchers, 2001; Ess, 2002;
Kraut et al., 2004; Skitka & Sargis,
2006; Walther, Loh, & Granka,
2005). While not discounting the
importance of ensuring the quality
of using the Internet to conduct re-
search, the goal of this article is to
present ethical issues in conducting
online research, as well as discuss
several opportunities for online
research in learning disabilities
(LD). It is the authors’ intention
to raise issues and pose questions,
rather than to provide resolutions
and answers, with the objective of
starting a meaningful dialogue that
may structure future methodologi-
cal consideration and planning.
Some thinking has already been
given to the subject of ethics, tech-
nology, and LD. For example, Ras-
kind and Higgins (1995) empha-
sized the importance of critically
analyzing and fully considering
the ethical implications of technol-
ogy relative to persons with LD.
The authors used the fundamental
Conducting Research on the Internet:
Ethical Issues and Opportunities for the
Field of Learning Disabilities
Marshall Raskind and Malka Margalit
Abstract
This article presents ethical issues in conducting Internet-based research, as well as discusses several opportunities for
online research in learning disabilities. Rather than to provide resolutions and answers, it is the authors’ intention to raise
issues and pose questions with the objective of starting a meaningful dialogue that may structure future methodological
considerations and planning.

7
Thalamus, Volume 24, Number 1
ethical principles of “beneficence,
justice, and autonomy” as a frame-
work from which to reflect upon
the use of technology with indi-
viduals with LD in an effort to help
ensure that the greatest possible
advantages would be gained, while
simultaneously minimizing any
potential negative consequences.
These same ethical principles were
used as the basis for the Belmont
Report (1979), which became the
philosophical underpinnings for
federal regulations governing the
protection of humans involved
in research (U.S. Department of
Health and Human Services, 45
CFR 46.102[f]). Although Raskind
and Higgins (1995) raised ethical
issues regarding LD and technol-
ogy, no consideration was given
to unique issues related to Internet-
based research.
In anticipation of growing inter-
est in the use of the Internet for
LD research, this paper will pres-
ent a number of ethical concerns
regarding online studies, as well
as potential opportunities for In-
ternet-based research in LD. At the
outset we have to examine if there
is a need for a unique set of ethical
considerations for online research.
ETHICAL ISSUES
RELATED TO INTERNET-
BASED RESEARCH
Internet vs. Traditional
Research
Internet researchers have pro-
vided a wide range of answers
regarding the question of whether
specific and unique ethical consid-
erations are needed for conducting
research on the Internet. On one
end of the spectrum are several
researchers who contend that the
Internet has to be treated as a space
in which “embodied human be-
ings” interact (White, 2002); thus,
individuals in virtual environments
must be treated in the same way as
human subjects in traditional stud-
ies. According to this perspective,
then, there is no need for a differ-
ent ethical approach, and “classic
rules” are applicable. On the oppo-
site end of the spectrum, are those
who argue that the Internet should
be treated as a textual repository,
where amateur authors deposit their
work (Bassett & O’Riordan, 2002;
Bruckman, 2002; Walther, 2005).
In line with this approach, Internet
research is discussed in terms simi-
lar to those used by researchers in
history and the arts, demanding
different considerations for ethical
dilemmas.
Thus, there is considerable debate
regarding whether basic ethical is-
sues involving the protection of hu-
man subjects are the same in “real
word” versus “virtual online set-
tings.” Elizabeth Buchanan, author
of Readings in Virtual Research
Ethics: Issues and Controversies
(Buchanan, 2004, 2005), proposes
that virtual research ethics take
traditional principles of research
ethics - justice, beneficence, and
respect for persons - and situate
them in virtual realms, that is, In-
ternet-mediated spaces. According
to Buchanan, researchers have a
responsibility and obligation to
conduct ethical research in face-to-
face settings, and this commitment
does not change in the virtual world.
Therefore, traditional principles of
ethics should remain intact in the
virtual world and subjects deserve
to be treated fairly, equitably, and
ethically. However, she recognizes
that the classic solutions to ethical
dilemmas will not be the same in
cyberspace as in the laboratory
(Buchanan, 2004). Solutions that
may work in the physical world
may require separate considerations
and modifications for virtual appli-
cations. Along these lines, several
social scientists (Bruckman, 2002;
Siponen, 2004) have expressed
deep concern regarding applying a
human subjects protection model
developed for science and medi-
cine to the kinds of research con-
ducted in the social and behavioral
sciences. From their perspective,
this model may be inappropriate
even in the real-world environment
(AAUP, 2000), and especially when
applied to social science research
conducted in online settings.
As mentioned, a distinctly differ-
ent approach to Internet research
does not view the online environ-
ment as a space in which human
beings interact, but rather as a
“textual repository.” This perspec-
tive asserts that the Internet has
transformed – in a profound way
– the context in which several tra-
ditional ethical issues arise. There-
fore, researchers contend that we
need to rethink, methodologically,
the very grounds on which our
ethical positions are based, not
simply adding new dimensions to
old problems (Siponen, 2004). For
instance, viewing Internet material
as cultural production, and treat-
ing the complex Internet material
as a highly constructed creation
composed of words and images
– more than as real human beings
– presents novel ethical dilemmas.
Perhaps humanities researchers
(scholars of literature, art, music),
should be included in such discus-
sions. Unfortunately, the opinions
and practices of these scholars
have not been taken into consid-
eration when drafting most of the
Internet guidelines (White, 2002).
The major dilemma is whether
online research deals with “human

8Thalamus, Fall 2006
subjects” (as in medical research,
as described by U.S. Department
of Health and Human Services, 45
CFR 46.102[f) or with “authors”
whose creative texts/art produc-
tions are intended to be public and
accessible for reading and analysis
by others.
Giving due consideration to
whether the online environment is
comprised of “embodied human
beings” or is a textual repository
(and any points in between) is more
than a theoretical exercise. Such a
distinction strikes at the very core
of protecting human research par-
ticipants. Simply put, if people’s
online communications are not
considered as at least embodiments
of human beings, these individuals
are not subject to protections under
federal law (e.g., U.S. Department
of Health and Human Services, 45
CFR 46.102[f] ) and may not re-
ceive sufficient consideration rela-
tive to fundamental ethical issues.
Ethical Pluralism
In presenting the complexity of
the ethical issues involved in In-
ternet research, it is important to
adopt an approach of “ethical plu-
ralism.” In other words, to address
the potential dangers of adopting
over-simplistic or rigid approaches,
insensitive to the distinctiveness of
the Internet, the ethical legitimacy
of more than one interpretation
must be recognized. We will
discuss a number of key and fre-
quently cited ethical considerations
regarding the protection of human
participants, including informed
consent, privacy, and protection
from harm (Ess, 2002; Frankel
& Siang, 1999; Walther 2005).
These issues revolve around the
fundamental ethical principles of
autonomy, beneficence and justice
mentioned earlier. It is important
to emphasize that this discussion
is limited to ethical considerations.
Any discussion of the legal aspects
of Internet research– while relevant
– is beyond the scope of this article.
Informed consent. Informed
consent is rooted in the ethical
principle of autonomy, which pro-
motes freedom of choice and inde-
pendence from controlling influ-
ences. According to the American
Psychological Assoc. (APA; 2002)
Standard 3.10, Section 8.02, and
in accord with federal regulations
(U.S. Department of Health and
Human Services, 45 CFR 46.116),
researchers must provide potential
subjects in a study with full in-
formation related to the following
issues: The purpose of the research,
expected duration and procedures;
right to decline participation and
to withdraw from the research;
consequences of declining or with-
drawing; factors that may influence
willingness to participate such as
potential risks, discomfort, or ad-
verse effects; prospective research
benefits; limits of confidentiality;
incentives for participation; and
contact persons for questions about
the research and research partici-
pants’ rights.
Briefly, the informed consent
process involves three interrelated
components:
1. Providing full and detailed
information to participants;
2. Ensuring that participants com-
prehend the information; and
3. Obtaining voluntary, insightful
agreement to participate in the
study.
Researchers are responsible for
determining what information to
convey to potential participants
as part of the consent process.
Although the process of gaining
informed consent seems clear,
the decision whether to seek and
obtain informed consent is becom-
ing complicated by the unique
features of the Internet, including
the blurred distinction between the
private versus the public domain
(Eysenbach & Till, 2001).
First, requesting informed con-
sent has the potential to disrupt
typical online interactions. For
example, participants in an online
discussion or support group might
sense that their private space is
being invaded and feel threatened
(Bruckman, 2002). These feelings
could make participants less will-
ing to self-disclose and openly
share personal issues, and thus,
less able to receive the full benefit
of an online community. Such a
situation could be seen as work-
ing in conflict to the principle of
beneficence. Second, it may be
more difficult for researchers to de-
termine whether a participant fully
understands the informed consent
statement because of the absence
of face-to-face interaction (Kraut
et al., 2004). Third, the ephemeral
nature of the Internet may make it
more difficult to reach the person
from whom informed consent is
being sought and verify that the
consent actually derives from that
person. In other words, it is easier
for a person to pretend to be some-
one else online than in real-world
settings.
Online research involving chil-
dren (e.g., students with LD) poses
particular difficulties as consent
is required not from the child, but
from a parent or guardian. In an
online environment, children may
not reveal their true identity and
not reveal their true age or may
pretend to be their parents (Kraut et
al., 2004). In the U.S., verification

9
Thalamus, Volume 24, Number 1
is further complicated by federal
law (Children’s Online Privacy and
Protection Act of 1998 [COPPA];
15 USC 6501 et seq.) which pro-
hibits researchers from collecting
personal information from a child
without parental permission.
A discussion of informed con-
sent further requires a conceptual
differentiation between public and
private domains, because informed
consent is not required for research
data collected from the public
domain (naturalistic observations)
(APA, Section 8.05, 2002; U.S.
Department of Health and Human
Services, 45 CFR 46.101(b)(4)).
The Internet has been considered
a public entity since 1995 when
the Federal Networking Council
defined the term “Internet” as a
global information system (Leiner
et al., 2003). However, online com-
munication occurs within social
contexts (albeit virtual) such as
online support groups that often
take on a private, personal tone
with the expectation of privacy by
the participants.
The format of communication
on the Internet can make issues of
privacy, confidentiality, personal
relationships and trust confusing
to researchers as well as online
participants. Individuals who
compose and send self-disclosing
messages may mistakenly feel that
they are initiating intimate, private
conversation when in fact others
view these messages as public.
For example, a message posted to
a group with hundreds of subscrib-
ers or placed on an open discussion
board might not be considered pri-
vate (as is the case with personal
information disclosed in a therapy
session with a psychologist). In
some ways, posting such messages
might be considered more similar
to talking about personal concerns
on a cellular phone in a public
space such as on a bus or crowded
street (Humphreys, Winzelberg, &
Klaw, 2000).
Several researchers consider In-
ternet space (cyberspace) to be part
of the public domain, although they
do deem the researcher responsible
for filtering out any personal and
private information from reported
messages. Others stress that al-
though individuals do not expect
their communication to be read by
those outside their online commu-
nity, the Internet remains a public
communication system (Elgesem,
2002); consequently, the study of
Internet communication cannot
be considered human subjects re-
search (Colvin & Lanigan, 2005).
Regardless of the particular view
of the Internet as a public or private
space, researchers have the ethical
responsibility for understanding
and respecting the diversity of
Internet communities/forums and
for considering the renewed mean-
ing of privacy in different contexts
(Eysenbach & Till, 2001).
The Internet may also be seen as
having another layer of complexity
with regard to what some theorists
call “the decline of the classical
theories of society and culture”
(Sharma, 2004, p. 5) leading to
plurality of social and cultural per-
spectives and the empowerment of
the peripheral voices. For instance,
Sharma (2004) asserts that the ad-
vent of the Internet represents the
beginning of the end of “how the
world is constructed in our minds”,
and that “old” distinctions between
such dichotomies as “what is
real” (“and not real”) and “what is
private” (“or public”) may not be
applicable to the emerging virtual
world. The fading of such distinc-
tions may have implications for the
way in which researchers concep-
tualize the Internet and the ethical
issues surrounding online research.
Privacy on the Internet. Privacy
is typically defined in terms of ac-
cess; specifically, who has access
to information, locations, and
objects. The concept of privacy is
often linked to the identification
of the self or the individual and
his/her personal boundaries, and
is grounded in cultural traditions
(Wallace, 1999). The need to draw
distinctions between private (lim-
ited access) and public (free access
to all) environments for the behav-
ior performed through the Internet
is becoming difficult.
It is important to remember
that the Internet serves as a com-
munication tool, sometimes
between complete strangers or
mere acquaintances, unbiased by
a person’s physical persona, and
where people use code names and
shorthand to describe who they are.
Online masking is an acceptable
behavior among Internet users,
and the sender can tightly control
and select the impressions relayed
to the public. Paradoxically, in this
virtual environment, when they
trust that their identity is concealed
individuals are more inclined to
openly reveal their true feelings
and thoughts to the larger public.
Thus, online messages (posted in
chat rooms, discussion groups, bul-
leting boards) people often disclose
private topics, share emotions and
describe their fears and frustrations
more so than in face-to-face set-
tings (Bargh & McKenna, 2004).
At the one extreme, information
gathered from online public com-
munication sources such as chat
rooms can be viewed as public
record and therefore used freely
without consent. However, several
researchers assert that this can only
be done as long as participants are

10 Thalamus, Fall 2006
not personally identified (Denzin,
1999). As Pace and Livingston
(2005) emphasize, the collection
and analysis of such publicly avail-
able information may be justified
without asking for consent under
strict circumstances that prevent
personal identification. It has even
been argued that since most partici-
pants keep their anonymity by iden-
tifying themselves by passwords
and assumed names, and without
submitting their e-addresses, any
appeal for consent may be regarded
as a threat to their privacy and con-
fidence and may therefore critically
jeopardize their sense of trust and
willingness to self-disclose.
While some Internet researchers
contend that online communication
forums with open memberships and
easily accessible archived informa-
tion should be considered “less pri-
vate” and “more public” and that the
people who post messages in these
groups should have no reasonable
expectation of privacy, others assert
that the privacy of Internet com-
munications does not really depend
on the accessibility of data. In their
view, whether information is to be
considered public or private is more
a matter of the group members’
perception and expectation for pri-
vacy (Berry, 2004; Frankel & Siang,
1999; Kraut et al., 2004). These
differential concepts of privacy
should be given due consideration
by researchers gathering data from
online groups as they have substan-
tial implications for ensuring that
online studies are in accord with the
ethical principle of autonomy and
avoiding potential harm.
Protection from harm. The ethi-
cal principle of beneficence as ap-
plied to research refers to maximiz-
ing possible benefits to participants
while minimizing any harm. Ethi-
cal practice obligates researchers
to take steps to predict, anticipate,
and avoid harm to participants
while maximizing benefits from
research (APA, Principle A; U.S.
Department of Health and Human
Services, 45 CFR 46.102[f][i]).
Internet research presents unique
challenges for the protection of
participants. For instance, when
privacy is invaded and confidenti-
ality violated, there is the possibil-
ity of harm to research participants
(Frankel & Siang, 1999). Further-
more, release of personal informa-
tion through research publications
(e.g., family/social relations; psy-
chological problems) without the
guarantee of anonymity may lead
to embarrassment and emotional
distress.
Researchers must also consider
whether entry into an online forum
has the potential of causing harm
to individuals within a virtual com-
munity. Researchers are ethically
bound to take reasonable precau-
tions to protect confidential infor-
mation obtained through or stored
in any medium. Therefore, in the
reporting of results, researchers
must remove any references to the
identity of the individual or group
location. This is necessary to mini-
mize loss of confidentiality and any
harm that could result.
Different sets of ethical consid-
eration evolve when researchers
move from passive roles of col-
lecting existing data on a message
board to more active roles such as
presenting questionnaires or invit-
ing discussion on a research topic.
While noting that the risk for harm
in online research is low, Kraut et al.
(2004) emphasize that it does ex-
ist. For example, survey questions
or feedback from an experiment
may prompt participants to “reflect
on unpleasant experiences or to
learn something unpleasant about
themselves” (p. 111), resulting in
emotional distress. (Of particular
interest here, is the possibility that
groups already prone to emotional
difficulties, such as persons with
LD, may be at even greater risk.)
Of course, such risks also exist in
face-to-face research. However,
the ability to monitor and respond
to participants’ emotional distress
may be diminished online (Kraut
et al., 2004).
Furthermore, a researcher’s entry
into an online community (e.g.,
support group) might disrupt group
interactions and compromise mem-
bers’ willingness to self-disclose
and share personal information.
This could happen even in efforts
to obtain informed consent. In this
regard, Buchanan (2002) notes that
people in online groups often react
with anger when they are made
aware that a researcher is “study-
ing” them (or their messages).
Reactions may vary according to
the degree to which the researcher
is passively observing online com-
munication or actively engaging
in a group such as participating
in an online discussion, as well as
whether the researcher has been
truthful about the purpose of par-
ticipating in the group.
Considering these dilemmas and
ethical concerns, we will now at-
tempt to assess the predicted ben-
efits of online studies for the LD
knowledge base.
OPPORTUNITIES FOR
ONLINE RESEARCH IN LD
Despite a proliferation of Internet-
based research in the behavioral
sciences in recent years (Birnbaum,
2001, 2004), such studies are rare
in the field of LD. In fact, the
authors could locate only two In-
ternet-based peer-reviewed studies.

11
Thalamus, Volume 24, Number 1
Ferri (2000) used an electronic-
mail discussion group to study
the experiences of women living
with LD, and Raskind, Margalit
and Higgins (in press) researched
children’s presentations of the “LD
experience” as expressed in online
messages on a public website de-
signed for children with learning
problems. While studies of this
type are still rare, they indicate the
potential value of Internet-based
studies in LD and may provide
impetus for future online research.
The Internet and
Empowering Possibilities
for Children with LD
Bos and Richardson (1994)
emphasized the importance of con-
ducting qualitative, ethnographic
research in LD. However, studies
investigating the LD experience
from the child’s “insider perspec-
tive” are limited (MacArthur, 2003).
Children and adolescents spend
many hours communicating online
(Lenhart, & Madden, 2005); hence
the Internet may provide a window
from which to view their “inner
life” through virtual, but authentic
communities, where electronic
communications are exchanged on
topics of personal significance and
interest in what is considered to be
a comfortable and “safe” environ-
ment (Raskind et al., in press).
By studying online messages, it is
possible to develop a deeper under-
standing of the thoughts, feelings,
and attitudes – both positive and
negative – of individuals with LD,
as well as the ways in which they
present themselves online. Online
messages may provide a rich data
source from which to view these
individuals’ hopes, fears, needs,
joys, as well as their difficulties
and frustrations. To exemplify
the uniqueness of such informa-
tion sources, we present a sample
of sites and a few short messages
demonstrating the wide variety of
topics and personal style of sharing
in different message boards (See
Table 1, next page).
The messages included in Table
1 were taken from public “LD-re-
lated” message boards identified
through a “Google” search (“mes-
sage board learning disabilities”).
The short citations make it clear
that the users disclose and share
personal issues. In fact, research
has indicated that individuals may
be more willing to self-disclose
and present their “true selves” over
the Internet than in face-to-face
“real world” interactions (Bargh &
McKenna, 2004; McKenna, Green,
& Gleason 2002). The anonymous
nature of online interactions may
provide the freedom to present
the self in ways that are less con-
strained by realities of “real - world”
settings (Calvert, 2002). Specifi-
cally with regard to children with
LD, Raskind et al. (in press) found
that they appeared more willing to
openly share their LD-related dif-
ficulties and seek help in electronic
messages over the Internet than in
face-to-face, real-world interac-
tions.
According to McKenna et al.
(2002), people who are lonely or
socially anxious are especially able
to find their “true selves” online,
often leading to the formation of
close and meaningful online rela-
tionships that appear to be durable
and stable over time. These find-
ings are important for students with
LD, since studies of their social
experiences have revealed that as
a group, they report higher levels
of loneliness, experiencing alien-
ation and social rejection (Margalit,
1994; Margalit & Al-Yagon, 2002)
as well as demonstrating social
skill deficits (Wiener, 2002, 2004;
Wiener & Schneider, 2002) than
their nondisabled peers.
Considering the documented
social and communicative difficul-
ties of students with LD (Margalit
& Al-Yagon, 2002; Stone, 2004;
Wiener, 2002), and the importance
of developing meaningful and sat-
isfying interpersonal connections
(Kavale & Forness, 1995), access
to digital communities is an em-
powering possibility. Communica-
tion on the Internet may provide
these individuals promising oppor-
tunities for developing self-identity
(Wallace, 1999) and experimenting
with social competencies and close
connections. Studies of adults
developing communication and
interpersonal relations on the In-
ternet reveal that these interactions
provide the opportunity to develop
new relations with people they
do not know well in a setting in
which they feel more comfortable
(e.g., their own home). Individuals
involved in online communities
can communicate with others at
their own pace, enabling them to
select more precisely what they
want to say instead of having to
immediately respond (McKenna et
al., 2002).
More research is needed to
examine the ability of children
with LD to initiate and maintain
interpersonal relations with peers
and adults in virtual environments.
Even if these children initially ac-
quire the needed social skills, they
may not have adequate opportuni-
ties to experiment with these skills.
Cyberspace can possibly provide a
controlled environment to meet and
interact with peers more often and
for longer periods than traditional
face-to-face social engagements
(Ward & Tracey, 2004) and, there-

12 Thalamus, Fall 2006
Table 1
LD-Related Message Boards and Sample Messages
Author Message Board
Mother My son also had profound http://forums.ldonline.org
anxiety issues … I feel like
that a lot too …
Adolescent Hi I am 16 and am dyslexic. http://www.voy.com/32297/
I would like to say that …
Child My spelling is getting a lot http://bees thewrongwayround.com
better, not that I’ve had
lessons from …
Adolescent The main reason why this http://forums.bellaonline.com
all came to me so suddenly
is that I’m just having a lot
of problems with …
Mother I know he works hard in http://www.schwablearning.org/message_boards
school, too. Learning
disabilities require that–
maybe they foster
determination …
Just had to share …
Girl In school my best friend has http://www.sparktop.org/connect/boards.asp
Dyslexia … she thinks it is
fun because …
fore, warrants further research.
The Internet may also offer an
opportunity for developing new
insight into understanding the
social identity of children with
LD, as expressed through their
styles of developing relationships
(Michinov, Michinov, & Toczek-
Capelle, 2004). The challenge of
developing interpersonal relations
applies not only to initiating, but
also to maintaining these relations.
For example, research on relation-
ship maintenance reveals that shy
persons develop relations more
easily online and enjoy Internet
possibilities for fostering interper-
sonal closeness (i.e., openness and
positive attitudes were the most fre-
quently used strategies to enhance
relations; avoidance strategies may
increase uncertainty in online rela-
tionships) (Ward & Tracey, 2004).
However, other studies report
that some individuals do not take
advantage of Internet opportuni-
ties and use similar strategies for
maintaining relationships in online
and in face-to-face settings (Kim &
Weaver, 2002). These conflicting

13
Thalamus, Volume 24, Number 1
findings call for future in-depth re-
search in order to determine when
individuals may benefit from the
new opportunities presented by the
Internet, and when they continue
to show the same difficulties and
struggles in the virtual environment.
This could lead to the development
of a relational maintenance typol-
ogy specifically for online interac-
tions, and may even provide a basis
for developing future interventions
for creating and maintaining mean-
ingful social relationships (Wright,
2004).
An additional opportunity for
LD research proposed by Internet
communication is related to gen-
der representation. Research has
documented gender differences
in the style of online messaging
(Calvert, Mahler, Zehnder, Jenkins,
& Lee, 2003) of children with LD,
with girls more than boys tending
to communicate and interact with
peers, as well as express their iden-
tity. Considering the lower repre-
sentation of girls LD in research,
this is a unique opportunity to study
the distinctive style of girls with
LD in interaction and communica-
tion. Earlier studies have shown
that boys’ and girls’ interaction
preferences on the Internet in gen-
eral are quite different (Maccoby,
1998). Boys tend to prefer more
active interactions in visual media
such as video games where con-
tents move fast and change rapidly
(Roberts, Foehr, Rideout, & Brodie,
1999). By contrast, girls tend to
prefer non-salient features such as
written words and dialogues. Boys
seemed more mouse-oriented in
their interaction styles, clicking
on menus and dragging avatars
around the screen. Girls on the
other hand, appear more keyboard-
oriented, typing messages to one
another. Additionally, since it takes
more time to write than to click on
menus or drag a character around,
girls tend to write more words and
longer messages (Calvert et al.,
2003; Jackson, Ervin, Gardner, &
Schmitt, 2001). Surveys in Israel
(Margalit, 2004) also reveal that
more girls than boys (with and
without LD) communicate us-
ing e-mail online. Noting these
gender differences, Internet-based
research would provide a unique
opportunity to further explore dif-
ferences between boys and girls
with LD, as well as between girls
with and without LD.
The Internet and Empowering
Possibilities for Families
Internet-based research on par-
ents of children with LD presents
another opportunity for study. Par-
ents of children with LD use forums
and discussion groups to share their
difficulties, to search for practical
solutions to day-to-day challenges,
and to seek support and advice
during difficult times. Parents of
children with LD often experience
stress related to their children’s
difficulties (Keller & Honig, 2004;
Lessenberry & Rehdfeldt, 2004;
Margalit & Al-Yagon, 2002). The
virtual communities of parents
may provide support, empower-
ment, and resilience (Patterson,
2002; Scharer, 2005). Parents who
may feel reluctant to participate in
face-to-face support groups may in
contrast communicate more openly
online, explicitly disclosing their
anxiety, secret fears and anger, and
also sources of pride in themselves
and their children, empowerment,
happiness and satisfaction. Per-
haps the freedom offered by online
forums to come and go and use
the online community as needed,
coupled with anonymity and an
intimate style, enables parents to
more readily disclose feelings of
distress, fear, mistrust, and disil-
lusionment.
For researchers, these online
sources may provide valuable
authentic information that can be
used to enhance our conceptualiza-
tion of family stress, resources, and
coping strategies. Such “inside
perspectives” on how parents feel,
what they expect, as well as what
they need from experts and profes-
sionals may extend our theoretical
understanding of family dynamics
and the impact of LD on the fam-
ily. Ultimately, therefore, schools
and service providers may become
more sensitized to parents’ needs.
The Internet may provide a
unique platform for valuable re-
search in critical topics, enabling
access to data on LD that otherwise
are unavailable or difficult to col-
lect. The development of Internet
research also challenges the con-
ceptualization of privacy in a public
environment and requires the start
of a dialogue among researchers
discussing in-depth ethical debates
within future studies of LD.
CONCLUSION
The approaches presented here
suggests the need for a structure of
ethical pluralism to help articulate
a series of questions and consid-
erations for Internet research that
reflect both shared agreements on
basic values and a recognition of
the ethical legitimacy of more than
one interpretation or application
of those norms and values. Our
discussion of the ethical dilemmas
related to online research presented
prevailing divergent views which,
at extreme ends treat cyberspace
as a place where embodied hu-
man beings interact or as textual

14 Thalamus, Fall 2006
and media repositories. Further,
contrasting positions surround
the issue of public versus private
spaces. Inevitably, these differing
perspectives suggest diverse ethical
approaches to conducting Internet
research. However, it may be pos-
sible to address the complexities
of these major ethical dilemmas
of Internet research through an ap-
proach based on ethical pluralism.
Postmodernist ethical approaches
(Nuyen, 2004) emphasize the im-
portance of contextual consider-
ations instead of rigid rules, calling
for an “ethical dialogue” on all
moral issues, paying careful at-
tention to the different conditions
in which they appear. It should
be emphasized that there are not
“ideal solutions” or rigid rules for
all moral alternatives. The ethical
dialogue does not automatically
lead to only one acceptable moral
choice, but renders a “moral choices
dialogue,” clarifying the implica-
tions for those who may be affected
by them. Thus, the proposal for an
ethical dialogue assumes there are
always various plausible solutions
to moral choice situations.
Therefore, we should not at-
tempt to identify the single correct
solution, or the single rule, but
concentrate on developing sets of
moral questions and arguments
as guidelines (Hamelink, 2000).
The need to protect human rights
is commonly recognized as the
leading guiding ethical principle
with universal validity (Hamelink,
2000) that can be adapted for the
ethics of cyberspace. But in order
to stay meaningful, this principle
must be examined in relation to
specific contextual dilemmas and
special groups.
Given the above, we prefer to
refrain from developing a set of
rigid ethical rules or guidelines for
conducting Internet-based studies.
However, it seems appropriate to
suggest that researchers give due
consideration to a number of criti-
cal issues that emerged during this
discussion. While all research
should ensure alignment with the
basic ethical principles of benefi-
cence, autonomy and justice, the
following general considerations
focus particularly on Internet re-
search.
• Consider whether cyberspace
is an environment where the
embodiments of human beings
(human subjects) interact or
whether it serves primarily as
a textual and media repository.
• Reflect on the public versus
the private nature of online
environments, including par-
ticipants’ perception of, and
expectation for, privacy.
• Determine the intrusiveness,
disruptiveness, and potential
harm to an online community
from research.
• Consider threats to anonym-
ity/confidentiality – and the
resulting harm – from person-
ally identifiable information
embedded in online messages.
• Determine the risks/potential
harm resulting from the in-
ability to monitor, face-to-face,
participants’ reaction/response
to the research.
• Consider the difficulties of se-
curing informed consent over
the Internet, such as ensuring
participants’ comprehension
of the research (including risks
and potential benefits) and
verifying their identity.
As researchers recognize the
opportunities inherent in online
research for enhancing our under-
standing of LD, it is imperative
that they simultaneously consider
the ethical issues involved in such
research. Automatically assuming
that conducting studies on the In-
ternet is no different than carrying
out research in real-world settings
could compromise the very prin-
ciples that guide ethical research.
Perhaps through case studies of
online data further experimenta-
tion and clarification of the ethical
consideration may be constructed.
Although the ethical issues and
questions that surround Internet
research are not always clear or
easily answered, it is hoped that
this paper will prompt reflection
that will help ensure respect for
individuals and protection from
harm, as well as promote recogni-
tion of the tremendous potential of
online studies.
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ABOUT THE AUTHORS
Marshall Raskind, Ph.D., is Direc-
tor of Research at the Charles and
Helen Schwab Foundation in San
Mateo, California.
Malka Margalit, Ph.D., is Profes-
sor of Education at the Constantiner
School of Education at Tel-Aviv
University, Israel.

17
Thalamus, Volume 24, Number 1
Frequency and Diagnostic Criteria for
Nonverbal Learning Disabilities in a General
Learning Disability School Cohort
William Solodow, Sandra V. Sandy, Fern Leventhal, Scott Beszylko, Margaret Jo Shepherd,
Jonathan Cohen, Shoshana Goldman, Richard Perry, Jennifer J. Chang and Ruth Nass
Abstract
Although nonverbal learning disabilities (NVLD) are not included in the Diagnostic and Statistical Manual IV, NVLD
is recognized by a wide range of professionals. To investigate the frequency of NVLD and the criteria for diagnosis,
3 professional groups (neurodevelopmentalists, clinical therapists, and educators) reviewed the school les of the 95
children attending a junior-senior high school for learning disabled students. Raters indicated whether the diagnosis was
NVLD, listed the main reasons for their decision, and lled out a 46-item Likert scale consisting of potential reasons for
and their importance to diagnosing NVLD in a particular student. Educators classied just 20% of the students as NVLD;
clinical therapists classied 39% and neurodevelopmentalists classied 51%. Both neurodevelopmentalists and clinical
therapists disagreed with educators more often than they agreed about who had NVLD. There was signicant agreement
about who did not have NVLD. All 3 groups classied 15 students as NVLD and 40 students as not NVLD. Generally,
the educators, least likely to diagnose NVLD, required an early strength in reading and a clear discrepancy between ability
and achievement. They did not give dual diagnoses and did not list social-emotional problems when spontaneously listing
reasons for diagnosis.. Thirteen Likert items (higher VIQ vs. lower PIQ; difculty perceiving gestalt; poor problem solving
skills; problems with nonverbal reasoning; unable to determine most salient features; problems perceiving social cues;
difculties with visual-spatial and visual-perceptual skills; weaknesses in visual organization; visual memory difculties;
poor handwriting or graphomotor difculties; gross motor difculties; strong decoding skills; difculty with conceptual
math) correlated with NVLD diagnoses by all 3 groups. Four additional items (slow visual processing; difculty adapting
to novel situations; poor nonverbal communication,e.g., limited eye gaze; inexible adherence to routines/rituals) emerged
when only the 55 cases where all 3 groups agreed on diagnosis were considered. NVLD appears to be a valid diagnosis.
Different professional groups do not necessarily use the same criteria for diagnosis and identify it with varying frequency
in different children.
Although Myklebust and John-
son (Johnson & Myklebust, 1967)
first coined the term nonverbal
learning disabilties (NVLD) al-
most 40 years ago, there is still no
consensus definition. The diagno-
sis is not included in the current
Diagnostic and Statistical Manual
– IV – Text Revised (DSM-IV-TR)
(American Psychiatric Association,
2000;). Necessary and sufficient
features have yet to be formalized
(McDonald, 2002; Roman, 1998;
Rourke et al., 2002). Complicating
matters further, the deficit patterns
in children with NVLD appear to
change over time as school and
home demands change (Casey et
al., 1991; Drummond et al., 2005;
Dugbarty, 2000; Ozols & Rourke,
1988, 1991; Rourke & Finlayson,
1978;, Rourke, 1989, 1995; Rourke
et al., 2002).
Historically different investiga-
tors have emphasized different
aspects of the disorder. However,
the aspects highlighted cross pro-

18 Thalamus, Fall 2006
fessional lines (e.g., educators,
clinical psychologists, neuropsy-
chologists, neurodevelopmental-
ists, speech pathologists). The
initial description of NVLD pro-
posed by two educators focussed
on socio-emotional and perceptual
difficulties (Myklebust & Johnson
(1967) highlighting the children’s
difficulties reading the meaning of
the actions of others (not too dis-
similar to the theory of mind dis-
order explanation for the autistic
spectrum disorders, Baron-Cohen
et al., 2000; Frith, 2003; Griffin et
al., 2006; Sigman et al., 2006).and
understanding various aspects of
person, self perception, and body
image (personal and extrapersonal
space) (Heilman & Valenstein
2003). In subsequent reports so-
cio-emotional deficits have been
considered as a defining/ neces-
sary feature of NVLD by some
but not all investigators in range
of professions – psychologists,
neuropsychologist, neurologists,
psychiatrists (Brumback et al.,
1996; Brumback & Straton, 1984;
Denckla, 1983; Little, 1993; Schee-
ringa, 2001; Semrud-Clikeman &
Hynd, 1990, 1991; Voeller, 1986;
Weintraub & Mesulam, 1983).
Palermo (2006), a clinical social
worker, has recently suggested a
four subtype model of NVLD with
socio-emotional problems at the
core (e.g., social cognitive impair-
ments (reciprocal social relations,
verbal and non verbal language,
affective processing), social im-
perception (nonlinguistic percep-
tual deficits)), and additional non
verbal neuropsychological deficits
(e.g., attention, executive function).
Speech pathologists among others
have emphasized the socio-emo-
tional difficulties as they manifest
in pragmatic language disorders
in NVLD children (Humphries &
Cardy, 2004; Worling et al., 1999;
Voldan, 2004). Pennington (1991),
a neuropsychologist, suggests
that the first signs of the disorder
are often emotional or behavioral
difficulties, rather than learning
difficulties. Yet other investigators
have highlighted the socio-emo-
tional defiicits, particularly anxiety
and mood disorders, that may per-
sist into adulthood and which may
be quite disabling (Brumback &
Staton, 1984; Cleaver & Whitman,
1998; Dugbartey, 2000; Semrud-
Clikeman & Hynd, 1990). The
possible overlap between NVLD
and Aspergers disorder (AD) is an
area of active discussion (Brum-
back et al., 1996; Goldstein et al.,
2001; Klin et al., 1995a;1995b;
2000; Martin & Klin 2004; Nass &
Leventhal, 2004; Volkmar & Klin,
1998; 2000). But, clearly not all
children with NVLD have AD and
not all AD children have NVLD.
A number of prominent investi-
gators do not consider socio-emo-
tional difficulties a core deficit..
Indeed, Rourke (Ozols & Rourke,
1985; Porter & Rourke, 1985;
Rourke, 1988; Rourke & Fuerst,
191; 1992; Tsatsanis, et al., 1997),
the neuropsychologist whose
name is most often linked with
the nonverbal learning disabilities,
suggests that socio-emotional
problems (including both internal-
izing and externalizing behaviors)
are not a primary feature of NVLD,
but rather secondary effects of the
learning difficulties, resulting from
the interaction between the neuro-
psychological assets and deficits.
Socio-emotional difficulties are
frequently reported in a number
of specific learning disabilities
(ranging from one third to three
quarters) suggesting that they are
not specific to NVLD (Bryan et
al., 2004; Bauminger et al., 2005;
Elksnin & Elksnin, 2005).
Rourke and his neuropsychol-
ogy colleagues (1989, 1993;1995;
Drummond et al., 2005; Harnadek
& Rourke, 1994; Pelleiter et al.,
2001; Strang & Rourke, 1985a,
1985b) focus on problems in math
as the crucial feature of NVLD and
on problems with visuo-perceptual
skills, sensorimotor functioning,
and reasoning abilities, which co-
occur in the same children . Math
difficulties are in essence built
into Rourke’s definition of NVLD,
since his original research NVLD
cohorts are defined by the presence
of poor performance in arithmetic
calculations relative to average or
above average reading (decoding)
and spelling (Rourke, 1993). Ad-
ditional investigators from many
professional backgrounds empha-
size math difficulties as a crucial
or at least a very common feature
of NVLD syndromes (Johnson
& Myklebust, 1971; Rourke &
Conway, 1997; Shalev et al., 2005;
Voeller, 1986). However, other
than in Rourke’s studies, not all
NVLD children have demonstrable
math difficulties. Indeed, for some
math skills are a strength (Forrest,
2004). Interestingly, math disabil-
ity and social skill disability show
a positive correlation in some stud-
ies (Badian, 1983; Kirby & As-
man, 1984). In some of Rourke’s
(Rourke & Fuerst, 1991) research
cohorts defined by better reading
than math skills those with NVLD
were more likely to have external-
izing, internalizing and anxiety per-
sonality profiles than the controls,
whereas the groups did not differ in
the number with normal, somatic
or conduct disorder profiles. Math
disabilities often co-occur with vi-

19
Thalamus, Volume 24, Number 1
suospatial problems (Venneri et al.,
2003).
Other academic issues are of
course reported in many children
with NVLD. Difficulties in some
of the sciences probably trade on
visuo-spatial difficulties and some
on executive dysfunction. Difficul-
ties with high level reading com-
prehension and written expression
(Humphries et al., 2004) are also
described in older children and ad-
olescents with NVLD, again prob-
ably as a reflection of executive
dysfunction and right hemipshere
related deficincies in inference
(Heilman & Valenstein 2003).
Consistent with Rourke’s finding
of sensorimotor deficits (Casey &
Rourke, 1992), several neurolo-
gists and neuropsychologists have,
while not specifying it as a primary
or necessary symptom of NVLD,
described left-sided motor and
sensory signs in many children
with nonverbal learning problems
(Denckla, 1978; Manoach et al.,
1997; Semrud-Clikeman & Hynd,
1991; Voeller, 1986; Weintraub &
Mesulam, 1981, 1983; per contra
Francis et al., 1988). Difficulties
with hand writing and develop-
mental coordination disorders/ dys-
praxia are common complaints par-
ticularly in younger children with
NVLD. Somatosensory function
may affect visuo-spatial function
(Barton et al., 2004; Dimitrovsky
& Spector, 1998). Somatosenosry
cortex lesions in adults not only
cause sensory problems, but can
also interfere with the ability to
process emotional facial expres-
sion (Damasio, 1994)
Visuo spatial difficulties were
common in Rourke’s research sub-
jects. Many, particularly neuropsy-
chologists, consider difficulties in
this domain a crucial characteristic
(Cornoldi et al., 1999; Forrest, 2004
). Low performance as compared
with verbal IQ is often the first
suggestion on neuropsychological
testing of NVLD and indicative
of visuo-spatial difficulties. Visuo-
spatial skills are certainly key to
performing well in certain academ-
ic subjects (Cornoldi et al., 2003;
Venneri et al., 2003).and finding
one’s way around in everyday life
(Mammarella & Cornoldi, 2005;
Mammarella et al., 2006).
Finally, Rourke’s description
of NVLD alludes to issues with
executive functioning like reason-
ing and hypothesis testing. Some
investigators, neurologists and
neuropsychologists among them,
see ADHD or at least attention is-
sues as a frequent symptom and/ or
comorbid disorder (Voeller, 1986).
Thus, executive dysfunction occurs
in NVLD and manifests as ADHD
(Pennington & Ozonoff, 1996) as
well as in other ways.
Neuroanatomically, the nonverbal
learning disabilities are generally
considered to reflect dysfunction of
the right hemisphere (Gross et al.,
1995; Monoach et al., 1995; Nichel-
li & Venneri, 1995; Njiokoktjien
et al., 2001; Sandson et al., 1994;
Semrud-Clikeman & Hyde, 1990;
Tranel et al., 1987; Voeller, 1986;
Rourke et al., 2002 Wasserstein &
Stefanatos, 2000). Like the varied
deficit patterns after acquired right
hemisphere lesions in adults, non-
verbal learning disabilities would
not be expected to be a single entity,
but rather manifest as a number
of different disorders with some
overlapping features (Heilman &
Valenstein 2003). Rourke suggests
that right hemisphere dysfunction
is sufficient to produce NVLD and
that white matter abnormalities
abnormalities necessarily produce
NVLD (Rourke, 1995; Rourke et
al., 2002). He suggests that NVLD
is seen in a number of pediatric and
neurological disorders associated
with white matter abnormalities
(e.g., hydrocephalus, agaenesis of
the corpus callum, leukodystro-
phies). Frontal lobe dysfunction
may underlie some of the deficits
in reasoning skills, attention, and
executive function, as well as so-
cial judgment. Parietal dysfunction
may underlie the spatial deficits,
paralinguistic problems, and the
sensorimotor problems, which
may secondarily promote socio-
emtional problems. these could
reflect right hemipshere dysfunc-
tion or white matter related discon-
nections.
In the absence of a clear definition,
it is not surprising that diagnostic
criteria are poorly standardized.
The most widely used diagnostic
criteria for the 9- to 14-year-old
age group are based on Rourke’s
discrepancy score between below
average arithmetic versus at least
average reading (decoding) and
spelling. These scores have been
generated using a number of dif-
ferent psychometric instruments
(Pennington, 1991; Rourke, 1993;
Rourke & Conway, 1997; Rourke &
Finlayson, 1978; Rourke & Strang,
1978; Siegal & Ryan, 1989; Strang
& Rourke, 1983, 1985a, 1985b).
Such criteria obviously bias those
diagnosed with NVLD towards
the subgroup presenting with math
problems. Recently, Rourke (2000;
Rourke et al., 2002; Drumond et al.,
2005) has suggested a diagnostic
algorhythm: (1) Wechsler Verbal
IQ greater than Performance IQ
by more than 10 points; (2) two
of Vocabulary, Similarities, or In-
formation subtests are the highest
Wechsler Verbal IQ scale scores;

20 Thalamus, Fall 2006
(3) two of Block Design, Object
Assembly, or Coding subtests are
lowest Wechsler Performance IQ
scale scores; (4) Target Test deficit
(Reitan, 1987); (5) Sensory deficits
(finger agnosia, graphesthesia and
stereoagnosia deficits); (6) Tactual
Performance Test deficit (Reitan,
1987); (7) Good gross motor (grip
strength) versus impaired fine mo-
tor (Grooved Pegboard, Lafayette
Instruments); and (8) Reading
(decoding) better than Math (cal-
culations/operations) as measured
on the Wide Range Achievement
Test (Jastak & Jastak, 1965). These
criteria create a bias towards diag-
nosing children with sensorimotor
and visual spatial difficulties as
having NVLD. Math problems
also remain a key criterion.
Summing up, children diagnosed
with NVLD have been described
as having some combination of
difficulties in: socio-emotional
functioning; non-verbal/ paralin-
guistic communication (prosody,
pragmatics); sensorimotor func-
tions (tactile perceptual, gross and/
or fine motor (clumsy, dysgraphia,
dyspraxia) slow processing speed);
spatial skills (visuo-perceptual,
motor, visual-spatial-organization-
al, visual-spatial working memory,
visual imagery, understanding
the gestalt); executive functions
(problems in planning, organiza-
tion, working memory, processing
speed, attention difficulties/ atten-
tion deficit hyperactivity disorder,
deficits in problem solving, reason-
ing, concept formation, hypothesis
testing, seeing the gestalt, guessing,
difficulty adapting to novel or com-
plex situations, motivation); and
academics (problems with hand-
writing, reading comprehension,
written expression, math opera-
tions and concepts, and science).
In an effort to gain a better under-
standing of the range of researchers’
and clinicians’ views of diagnostic
criteria for NVLD, we developed
a list of potential characteristics of
the disorder based on the extant lit-
erature and asked different special-
ists to indicate which criteria were
important to them when making
the diagnosis of NVLD.
METHOD
Subjects
The subjects of this study were
95 children ranging in age from
12 to 19 years who attended a
specialized school for middle and
high school students with learning
disabilities. The study took place
during the 1999-2000 school year.
One hundred one children were
enrolled but six were eliminated
from the study due to insufficient
data in the school file (3), physi-
cal handicaps (blind, deaf) which
compromised the validity of the
chart assessments (2), and mental
retardation (1).
The particular LD school which
served as our subject source is lo-
cated in New York City and accepts
students with Dyslexia, ADHD, and
NVLD. The school actively seeks a
diverse population of learners so as
to have several distinct subgroups
of each type that become the dif-
ferentiated class groupings ame-
nable to the school’s program -- the
“diagnostic feedback model”. This
model seeks to identify academic,
cognitive and social-emotional
patterns for each student, group-
ing them with similar students
on similar levels and designing
an appropriate curriculum. This
systemic operation allows the
school to precisely meet the needs
of students in all sub-categories
of learning problems in a highly
individualized manner. Typically
about one third of the students
have previously attended a special
education private school, one third
a mainstream private school, and
one third a public school (approxi-
mately two thirds of the latter in
special education and one third in
regular class). They come to this
private special education school
because they have aged out of
their previous programs or they
require more intensive educational
remediation than they have been
receiving. It is possible that there
could be a bias at this particular
school toward accepting children
with NVLD in order to round out
the groupings for their special
educational services. The parents
of children attending this school
consent to having their children’s
school performance/ progress scru-
tinized by outside experts for the
purposes of furthering the school’s
educational agenda, as well as the
individual student’s educational
needs.
Procedure
In an attempt to further refine
the diagnostic criteria for NVLD
and examine its frequency, three
groups of professionals (neurode-
velopmentalists, clinical therapists,
and educators) screened the school
files of these 95 youngsters to
determine how many had NVLD
and on what basis a diagnosis of
NVLD was/could be made. These
professionals were involved in a
multidisciplinary ongoing work
group studying learning dis-
abilities. Their ratings were based
entirely on information contained
in the school files. The neurode-

21
Thalamus, Volume 24, Number 1
velopmentalist team consisted
of a psychologist who was also a
speech and language specialist, a
neuropsychologist, and a pediatric
neurologist with postdoctoral train-
ing in neuropsychology. The latter
two each reviewed about 2/5 of
the charts and the former 1/5. The
clinical therapist team consisted of
three clinical psychologists, all of
whom had training in assessment,
and a pediatric psychiatrist. Each
reviewed about ¼ of the charts.
The educator team was made up
of four special educators. Sixty-
four percent of the charts were re-
viewed by one of the educators and
the remaining 36% were equally
distributed among the other three.
Raters indicated whether the diag-
nosis was NVLD or not, spontane-
ously listed the main reasons for
their decision if the diagnosis was
NVLD and then filled out a Likert
scale of 46 items, rating the degree
to which each item influenced their
diagnosis of NVLD in a particular
subject (1 = Not at all Characteris-
tic; 5 = Extremely Characteristic).
The first step in the development
of the Likert scale items was the
determination of appropriate con-
tent. Items were culled from the
Diagnostic and Statistical Manual
criteria for autism and Asperger
Disorder, from Rourke’s criteria
lists, as well as items relating to
academic skills. Characteristics
of nonverbal learning disabilities
were also culled from those found
in patients with right hemisphere
dysfunction. The literature on the
diagnosis of nonverbal disabilities,
visual-perceptual skills, reme-
diation and classroom strategies
was examined from educational,
clinical, and assessment perspec-
tives. Interviews with physicians,
neuropsychologists, therapists,
educators, and parents of nonverbal
learning disability children were
also conducted and used to gener-
ate supplementary items. Overall,
items were chosen so that the list
covered executive functions, visuo-
motor abilities, pragmatic skills,
sensorimotor functions, social
emotional functions, and academ-
ics. Through systematic review, an
initial pool of items was created.
This initial list was discussed and
reviewed by the investigators who
then eliminated some items and
added others. Forty-six items were
then organized into a questionnaire
format and reviewers of the files
were asked to respond to each item
by choosing one of five alternative
response categories on a five-point
Likert-type scale. The scale was
used to assess the degree to which
the respondent felt each item ac-
curately represented the amount
of weight they gave the item in
formulating whether the child mer-
ited a nonverbal learning disability
diagnosis.
Since several participants re-
viewed charts in the name of each
of the professional groups, within-
group reliability was assessed by
having all the members in each of
the three groups rate the same five
arbitrarily chosen charts as NVLD
or non-NVLD. For each of the
three groups, within-group reliabil-
ity was 60%. Groups were formed
based on similarity of training and
practice focus because it proved
too difficult to have individual
reviewers review all 95 charts. The
within group reliability rate of 60%
is not optimal. However, the low
rate is mitigated to some degree
by the fact that the within-group
disagreements all occurred on
subjects where the three different
professional groups also disagreed.
All the data reviewed was retro-
spective. For almost all students
it included psychometric and/or
neuropsychometric and/or edu-
cational assessments (of varying
thoroughness) done as part of the
admissions process and sometimes
repeated during their tenure at the
school. The data also included
comprehensive parent application
forms, report cards with extensive
comments, and biannual standard-
ized testing which generally in-
cluded the Visuomotor Integration
Test (Beery & Buktenica, 1995),
and reading, written expression
and arithmetic measured with the
Woodcock Johnson Test of Aca-
demic Achievement (Woodcock &
Johnson, 1989).
Data Analysis
A nonparametic Binomial Test (a
chi-square goodness of fit test) was
used to make a three way com-
parison of the groups regarding
the proportion of cases where the
NVLD diagnosis was made. Two
way comparisons of the groups to
determine levels of overall agree-
ment/disagreement with regard to
diagnoses of NVLD/Not NVLD
also used the Binomial Test. Fi-
nally, correlational analyses were
conducted on the 46 items from the
Likert scale for each professional
group to determine which variables
were most salient in making the
diagnosis.
RESULTS
Frequency of Diagnosis by
Individual Professional Groups
Table 1 indicates the proportion
of students classified as NVLD or
not NVLD by raters from each of

22 Thalamus, Fall 2006
the three professional groups. The
likelihood that a given student
would be classified as NVLD varied
significantly from one professional
group to another, χ2 (2, N = 95) =
19.43, p < .001. Educators were
significantly less likely to diagnose
a student as having NVLD than
were either neurodevelopmentalists
or clinicians. There was no signifi-
cant difference between clinicians
and neurodevelopmentalists in the
rate of NVLD diagnosis.
Comparisons of the
Professional Groups
Educators and neurodevelopmen-
talists agreed regarding a diagnosis
of NVLD on 60 cases (63%) while
disagreeing on 35 cases (37%).
Using a binomial test to compare
these overall rates of agreement
versus disagreement on the diag-
nosis by the two groups yields a
significant deviation from the .50
proportion expected by chance, p
< .001 (Figure 1). These findings
indicate significant reliability in
classifications made according to
the criteria used by the raters in
both of these professional groups.
Educators and neurodevelopmen-
talists agreed that 16 cases had
NVLD (17%) and that 44 cases
did not have NVLD (46%). In
summary, these two professional
groups agree about their ratings ap-
proximately two out of three times.
Educators and clinical therapists
(Figure 2) were significantly more
likely to agree on a diagnosis con-
cerning the presence or absence of
NVLD (n = 71) than they were to
disagree on the diagnosis (n = 24), p
< .001. Both groups agreed that 16
students had NVLD and 55 did not.
With regard to the 24 cases where
educators and clinical therapists
disagreed, 3 students were classi-
fied as NVLD by the educators, but
not by the clinical therapists and 21
students were classified as NVLD
by the clinical therapists but not by
the educators.
Clinical therapists and neuro-
developmentalists agreed on 74
cases (78%) and disagreed on 21
cases (22%). Using a binomial
test to compare these overall rates
of agreement and disagreement
yields a statistically significant
difference, p < .001, and points to
Table 1
Comparison of Classication of NVLD/Not NVLD by Three Groups
Classification
NVLD Not NVLD
Group N % N %
Educators 19 20 76 80
Clinicians 37 39 58 61
Neurodevelopmentalists 48 50 47 50
χ2 (2, N = 95) = 19.43, p < .001.

23
Thalamus, Volume 24, Number 1
significant reliability in making the
categorization. Clinical therapists
and neurodevelopmentalists agreed
that subjects had NVLD in 32 cases
(34% of the total sample) and did
not have it in 42 cases (44%). In
summary, the two professional
groups agreed about diagnosis on
about 4 out of 5 cases (Figure 3).
Figure 4 (next page) shows the
overall level of agreement (58%)
versus disagreement (42%) regard-
ing a diagnosis of NVLD for all
three groups taken together. When
the individual judgments of the
three groups were combined, the
rate of disagreement increased
and the binomial test on the rate
of agreement versus disagreement
was nonsignificant.
Correlations of Checklist
Items with Diagnosis of
NVLD/Not NVLD
The number of cases used in
calculating each of the correlations
varied since raters at times indi-
cated that there was insufficient
data in the chart to make a rating
for that particular variable. All
correlations are reported regard-
less of the n for each item. To
better understand criteria shared
by the three professional groups,
an additional table of correlations
of checklist items with diagnosis
of NVLD/not NVLD that used
only those cases where the groups
agreed is reported.
In the total sample (N = 95),
there was agreement among the
three professional groups doing
the ratings regarding 13 variables
that were found to correlate signifi-
cantly with the NVLD/not NVLD
diagnosis (Table 2, pg 25). An ad-
ditional 14 variables were found to
correlate with diagnosis for two of
Figure 1
Comparison of NVLD Classication:
Educators by Neurodevelopmentalists
Figure 2
Comparison of NVLD Classication:
Educators by Clinicians

24 Thalamus, Fall 2006
the three professional groups and
11 more were found to be signifi-
cantly correlated by only one of the
professional groups. In total, 38 of
the 46 variables were found by one
or more of the professional groups
to have a significant correlation
with NVLD/not NVLD. The num-
ber of significant correlations for
each group varied to some degree
– educators found 31 correlations
that attained significance (67%
of the total number of variables);
clinical therapists found 26 (56%);
and neurodevelopmentalists saw
20 (43%) as significant. Educators
used the most variables in making
their choice, while neurodevelop-
mentalists used the fewest.
In the smaller sample of cases
where the three professional groups
agreed on diagnosis(N = 55), all
but one of same 13 variables
found in the larger sample remain
significantly correlated and four
new checklist items emerge.One
variable, previously correlated for
all three in the larger sample, is on-
lycorrelated for two of the groups
(Table 3, pg 26). Correlations for
9 other variables changed slightly --
3 becoming significantly correlated
for two of the professional groups;
3 becoming correlated with only
one group instead of two; and 3
variables either becoming signifi-
cant or losing significance for one
of the three professional groups.
DISCUSSION
This is a ‘naturalistic’ study with
three different professional groups
making NVLD diagnoses based
on ‘real life’ data sources: parent
applications, entry psychoedu-
cational and neuropsychological
evaluations, school records and re-
ports, and yearly standardized test
Figure 3
Comparison of NVLD Classication:
Clinicians by Neurodevelopmentalists
Figure 4.
Three-Way Cross-Tabulation of Classications:
Educators by Clinicians by Neurodevelopmentalists

25
Thalamus, Volume 24, Number 1
Table 2
Correlations Between Classication (NVLD vs. Not NVLD)
and Ratings on Individual Indicators
RATER GROUP
Clinical Neuro-
Indicator/Problems Educators Psychologists developmentalists
n r n r n r
Verbal vs. performance IQ 92 .64**** 93 .71**** 93 .59****
Visual organization 91 .59**** 92 .64**** 95 .47****
Visual memory 82 .35**** 73 .49**** 76 .46****
Perceptual skills 91 .59**** 91 .72**** 95 .57****
Perceiving gestalt 84 .52**** 78 .55**** 84 .37****
Graphomotor 87 .30*** 83 .40**** 91 .30***
Problem solving 84 .39**** 85 .43**** 87 .30***
Nonverbal reasoning 90 .62**** 85 .71**** 89 .32***
Gross Motor 67 .34*** 49 .42*** 75 .24*
Math concepts 95 .41**** 95 .45**** 93 .23*
Decoding skills 94 -.40**** 95 -.24* 95 -.36****
Understanding arithmetic 94 .41**** 95 .42**** 94 .21*
Determining most salient features 78 .37**** 70 .33** 74 .28**
Impaired conversation 79 .32*** 74 .08 80 -.12
Peer relations 85 .40**** 75 .34*** 84 .09
Lack social reciprocity 79 .46**** 69 .37*** 63 .22
Sensory deficits 18 .44 6 .55 12 .82****
Weak reading comprehension 95 .12 94 -.04 95 -.10
Abstraction 88 .42**** 85 .21 89 -.07
Eye contact 58 .46**** 49 .51**** 62 .12
Circumscribed interests 27 -.08 35 .54**** 49 .17
Rituals 46 .30* 35 .54**** 50 .17
School-based problems 95 .11 95 .09 93 .03
Adaptation to novel situations 48 .57**** 33 .36* 46 .20
Making transitions 49 .52**** 32 .31 45 .13
Language skills 71 .31** 73 -.02 79 .03
One-sided discourse 34 .39* 42 .38* 53 .14
Appreciating humor 38 .09 31 .20 41 -.01
Social cues 67 .58**** 60 .50**** 67 .26
Written composition 95 -.05 92 .12 95 -.03
Inattention 90 -.05 91 -.03 91 .00
Visual processing 53 .21 85 .48**** 87 .28**
History depression/anxiety 66 .07 59 -.10 81 .23*
Impulsivity 84 -.07 76 -.02 86 -.04
Hx multiple diagnoses 86 .02 85 .18 75 .27*
Hx rote verbal memory 77 .22* 71 .07 77 -.31**
Understanding inference 86 .29** 59 .14 65 -.02
Hx conflict with family 47 -.02 37 -.10 45 .18
Vocabulary 92 .06 88 -.25* 94 -.49****
Syntax 86 .14 81 -.09 92 -.51****
Hx school phobia 57 .28* 42 .22 50 .28*
Empathy 71 .48**** 62 .36*** 62 .19
Understanding beliefs of others 73 .47**** 58 .40*** 50 .11
Communicates better with
young/old 17 .51* 14 -.21 26 .03
Tendency to be literal 68 .52**** 52 .38** 71 .14
Grades 93 -.01 88 -.15 92 .03
* p < .05. ** p < .01. *** p < .005. **** p < .001.

26 Thalamus, Fall 2006
Table 3
Correlations Between Classication (NVLD vs. Not NVLD) and Ratings on
Individual Indicators for Cases Where All Three Groups Agreed
RATER GROUP
Clinical Neuro-
Indicator/Problems Educators Psychologists developmentalists
n r n r n r
Verbal vs. performance IQ 54 .88**** 54 .80**** 54 .91****
Graphomotor 50 .52**** 49 .44**** 52 .33*
Gross Motor 39 .55**** 32 .39* 42 .43***
Math concepts 55 .42**** 55 .54**** 54 .41***
Visual organization 54 .65**** 54 .68**** 55 .58****
Problem solving 48 .39** 50 .37** 52 .40***
Eye contact 35 .46*** 25 .49** 34 .34*
Rituals 28 .38* 20 .79**** 24 .46*
Adaptation novel situations 27 .67**** 17 .68*** 25 .50**
Decoding skills 55 -.64**** 55 -.36** 55 -.39***
Visual memory 46 .48**** 43 .54**** 45 .57****
Understanding arithmetic 54 .43*** 55 .41**** 54 .34**
Visual processing 28 .52*** 49 .52**** 49 .41***
Perceptual skills 53 .81**** 55 .75**** 55 .64****
Perceiving gestalt 48 .73**** 46 .60**** 50 .61****
Nonverbal reasoning 51 .78**** 50 .72**** 53 .53****
Impaired conversation 47 .30* 39 .13 44 .08
Peer relations 48 .52**** 42 .58**** 49 .14
Lack social reciprocity 46 .50**** 39 .55**** 35 .25
Sensory deficits 13 .59* 2 --a 8 .86**
Weak reading comprehension 55 .24 55 -.20 55 -.03
Abstraction 51 .41*** 48 .12 53 -.04
Circumscribed interests 13 --a 19 .54* 26 .41*
School-based problems 55 .06 55 .14 54 .09
Making transitions 26 .74**** 16 .56* 25 .36
Language skills 40 .23 40 .17 44 .32*
One-sided discourse 16 .66** 23 .30 29 .24
Appreciating humor 21 .24 16 -.12 24 .04
Social cues 39 .75**** 32 .66**** 34 .37
Written comprehension 55 -.25* 54 .08 55 -.09
Inattention 52 .01 52 .04 52 -.18
History depression/anxiety 39 -.01 34 .02 46 .11
Impulsivity 48 -.08 42 .11 49 -.05
Hx multiple diagnoses 52 .01 50 .12 42 .38*
Hx rote verbal memory 43 .36* 42 .10 41 -.05
Understanding inference 50 .30* 34 -.03 38 .28
Hx conflict with family 27 -.05 19 -.01 26 .25
Vocabulary 54 -.16 51 -.41*** 55 -.36**
Syntax 49 -.00 47 -.23 53 -.35**
Hx school phobia 32 .32 22 --a 25 .46*
Empathy 42 .61**** 32 .54*** 36 .21
Understanding beliefs of others 42 .63**** 32 .54**** 28 -.16
Communicates better with
young/old 9 --a 7 -.26 12 -.09
Determining most salient features 43 .48**** 37 .32 44 .39**
Tendency to be literal 39 .68**** 31 .35* 42 .18
Grades 53 -.03 52 -.20 53 .07
*p < .05. **p < .01. ***p < .005. ****p < .001. a Correlation not calculated due to zero variability on indicator.

27
Thalamus, Volume 24, Number 1
results of adolescents attending a
New York City private school for
learning disabilities. Such a study
offers insight about the diagnostic
concept of NVLD in everyday life.
This study allows for a fuller con-
sideration of all factors that might
be relevant to a variety of profes-
sional groups concerned with the
issue prior to the availability of
any definitive inclusion/exclusion
criteria for the diagnosis.
Depending on the professional
group making the judgment, any-
where from 20% to 51% of the stu-
dents at this New York City school
for learning disabilities were
judged to have NVLD. This is con-
siderably higher than the reported
frequency in the general popula-
tion which ranges from 0.1% to 1%
to 5-10% (Rourke, 1989; Rourke &
Strang, 1978; Tranel et al., 1987).
The high frequency found in this
study may be representative of LD
populations in general or could be
biased by the admission policies
of the particular LD school these
students attended. Since most of
the raters participated in an NVLD
study group for 3 years prior to
doing this project, they may have
been sensitized to the diagnosis
leading them to make it more fre-
quently. However, the varying fre-
quency of the diagnosis among the
three professional groups speaks
against this.
The percentage of subjects clas-
sified as NVLD was highly depen-
dent on which professional group
did the rating. Neurodevelopmen-
talists and clinical therapists were
2 to 2 ½ times more likely to make
the diagnosis than educators were.
The lower frequency of educator
ratings for NVLD lowered the level
of agreement with each of the other
two other professional groups with
regard to which students had the
disorder. Clinical therapists and
neurodevelopmentalists disagreed
with educators more than they
agreed about who did have NVLD.
Two-way comparisons involving
educators mainly showed agree-
ment about who did not have the
disorder. It is mainly these high
rates of agreement about who did
not have the disorder that makes
the overall percentages of agree-
ment high. Thus, it would be mis-
leading to call the overall ratings in
comparisons involving educators
and the other two groups as reliable
in that statistical significance is
mainly based on agreement about
which students can be excluded.
The low level of agreement be-
tween educators and other profes-
sional groups about who does have
NVLD suggests the hypothesis
that educators have more strin-
gent diagnostic criteria – a greater
constellation of symptoms had to
be present for them to make the
diagnosis. They in fact chose more
variables as significantly correlated
with NVLD than either of the other
two professional groups. More
subjects were consequently ruled
out. Generally, the educators, least
likely to diagnose NVLD, required
an early strength in reading and
spelling and a clear discrepancy
between ability and achievement.
Raters from all of the professional
groups vacillated about making the
diagnosis of NVLD when the child
had both language based dyslexia
and NVLD, but the educators never
made a dual diagnosis.
The study shows strong agree-
ment between clinical therapists
and neurodevelopmentalists with
regard to ratings of NVLD. These
two groups were more likely to
agree than disagree both with re-
gard to who has NVLD and who
does not. Agreement here may
reflect the fact that these these
two professional groups are more
likely to be making the diagnosis
than educators are. The fact that
reliable ratings could be made by
these two groups lends some sup-
port to the validity of NVLD as a
diagnostic category. From a clini-
cal perspective, however, there are
many students (22% in this study)
where there is disagreement about
diagnosis.
In addition to levels of agreement
and disagreement among the three
groups with regard to a global rat-
ing of NVLD/ not NVLD, the find-
ings reported here also focus on
which of 46 indicators of NVLD
are salient in making the rating.
Thirteen indicators appeared to
be particularly important. The
13 were consistent with findings
of other studies: Higher VIQ vs.
lower PIQ; difficulties with visual-
spatial and visual-perceptual skills;
weaknesses in visual organiza-
tion; visual memory difficulties;
difficulty perceiving gestalt; poor
problem solving skills; problems
with nonverbal reasoning; inability
to determine most salient features;
poor handwriting or graphomotor
difficulties; gross motor difficulties;
difficulty with conceptual math;
difficulty understanding arithmetic
calculations; and strong decoding
skills.
These variables span several
domains of functioning that have
been associated with NVLD in
other studies. Higher VIQ vs.
lower PIQ has been the most com-
monly agreed upon feature and is
probably a reflection of the visuo-
spatial difficulties so comon in
NVLD.. This was attested to by the
individual specification of visuo-

28 Thalamus, Fall 2006
spatial and perceptual difficulties,
visual memory problems and weak
visual organization skills. These
deficits could contribute to prob-
lems determining the most salient
features of a situation, perceiving
the gestalt and poor nonverbal
reasoning. The finding of overall
poor problem solving suggests
that these latter deficits could also
reflect executive dysfunction. Fine
and to a lesser degree gross motor
dysfunction have also been hall-
marks of NVLD. Both problrms
with conceptual math and trouble
performing arithmetic calculations
are prominent academic markers.
An inverse relationship to decoding
skill, found in this study, is com-
monly seen in other studies in that
students with NVLD are thought
to be excellent rote learners, highly
capable of learning the ‘mechanics’
of many academic areas that can be
learned through drill and practice.
Due to the low levels of agree-
ment between the educators and
the other professionals about who
had NVLD a closer look was taken
at only those subjects where the
three professional groups did agree.
Although this made for a smaller
sample size, a careful examination
of criteria for making the diagnosis
was possible once cases were elim-
inated where there was disagree-
ment. Most of the variables found
in the larger sample remained sa-
lient in this smaller sample. (Only
one variable, difficulty in determin-
ing the most salient features, was
no longer significantly correlated
for all three professional groups).
Four new variables emerged: poor
nonverbal communication, e.g.,
limited eye contact; inflexible
adherence to routine/ritual; poor
adaptation to novel situations; and
slow visual processing. The later
fits with the afore mentioned visual
difficulties.
The other three new significant
variable relate to weaknesses in
socio-emtional functioning which
as discussed above have often been
associated with NVLD. There were
in fact 13 variables on the checklist
that related to social skills. Though
none of these variables was sig-
nificantly correlated with NVLD
for all three professional groups
in the larger sample, 8 out of the
13 were significantly correlated for
two of the three groups: problems
forming friendships, lack of social
or emotional reciprocity, poor non-
verbal communication/limited eye
contact, inflexible adherence to
routine/ritual, pedantic/one-sided
discourse, problems perceiving
social cues, lack of empathy and
problems understanding the feel-
ings and beliefs of others. It is may
be that these variables did not prove
as important as they might because
the students were never seen by the
investigators.
Several limitations of this study
require mention. Although use of
the Likart scale indicators added
considerably to our understanding
of the criteria used to diagnose
NVLD by each of the three profes-
sional groups, the indicators them-
selves were not defined. Given
the study’s purpose which was to
explore existing criteria among the
three different professional groups,
it seemed counterproductive to
establish the meaning of each vari-
able. Each clinician used them
according to his/ her own under-
standing. As with any retrospective
study some of the results reflect
biases introduced by the data avail-
able, which varied from subject to
subject. While almost all the study
subjects had had a learning disabili-
ties evaluation including an IQ test,
and measures of academic achieve-
ment, the other psychometric tests
used varied widely. Some of the
testing had been done by the board
of education, but most of the evalu-
ations had been done by a range of
psychologists and neuropsycholo-
gists in private clinical practice in
the New York City area. A few
assessors had seen more than one
of the children in the school. Very
few of the evaluations included data
about motor and/ or sensorimotor
function. Information about psy-
chosocial functioning was often
implicit rather than explicit. The
factors that turned out to be key to
an NVLD diagnosis also reflected
and were potentially biased by the
list of factors we created/ had to
choose from. The fact that the rat-
ers never saw the children person-
ally was a definite limitation and
probably explains why pragmatic
skills did not weigh heavily in
diagnosis. (In a companion paper
we compare the diagnoses of the
three professional groups to that of
the headmaster who knew the chil-
dren well. The headmaster often
depended on pragmatic skill status
for diagnosis. Nass et al., in prepa-
ration) The lack of available data
likely explains the failure of tactile
sensory deficits, considered so im-
portant by Rourke, to be weighted
more heavily for diagnosis. Finally,
the raters within each group were
not uniform in background; the
designation of group membership
reflected what we considered the
best way to divide our study group
all things considered.
Nonverbal learning disabilities
appeared to be quite common in
this pre-selected learning disabled
population. The variability in the
criteria each investigator used

29
Thalamus, Volume 24, Number 1
to make the diagnosis fostered
interesting and informative group
discussions. As a follow-up to
this study we have asked different
professional groups to indicate
whether they make the diagnosis
and what criteria they use. Having
seen the enormous variability in
the batteries used to test LD chil-
dren and the ease with which the
NVLD diagnosis can be missed if
the right questions are not asked,
we continue to work to develop a
streamlined battery that allows the
diagnosis of NVLD to be made
when appropriate. NVLD appears
to be a valid diagnosis, although
different professional groups may
not use the same criteria for diag-
nosis.
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ABOUT THE AUTHORS
Ruth Nass, M.D. is a Pediatric
Neurologist and Professor of Clini-
cal Neurology at NYU Medical
Center. She has a special interest
in learning disabilities of all kinds,
autism, and ADHD. She does clini-

33
Thalamus, Volume 24, Number 1
cal research on the cognitive effects
of early stroke.
Sandra Sandy, M.A. is a research
associate at the Center for Social
and Emotional Education.
Jennifer Change, B.A. is a re-
search associate at the Center for
Social and Emotional Education.
Jonathan Cohen, Ph.D. is the
President, Center for Social and
Emotional Education; Adjunct Pro-
fessor in Psychology and Educa-
tion, Teachers College, Columbia
University and Adjunct Professor
in Education,School of Profes-
sional Studies, City University of
New York.
Margaret Jo Shepherd, Ed.D. is
Professor Emerita of Education at
Teachers College, Columbia Uni-
versity and on the Faculty at the
New York-based Center for Social
and Emotional Education.
Richard Perry, M.D. is a child
and adolescent psychiatrist and a
Clinical Professor of Psychiatry
at NYU School of Medicine. He
has a special expertise in Asperger
Disorder.
William Solodow, Ph.D. is a
faculty member at the Columbia
Center for Psychoanalytic Train-
ing and Research and the consult-
ing psychologist at the Riverdale
Country School. He is in private
practice in New York City.
Fern Leventhal, Ph.D. is an
instructor of psychology in psy-
chiatry at the psychiatric institute,
Columbia Presbyterian Medical
Center. She has a private practive
in neuropsychology.
Shoshana Goldman, Ph.D. is a
speech and language pathologist
in private practice. She has an ap-
pointment at Columbia University
Medical Center.
Scott Beszylko, MA is the
headmaster of Winston Prepara-
tory school, a junior sensior high
school for adolescents with learn-
ing disabilities. His school has a
high proportion of youngsters with
NVLD.

34 Thalamus, Fall 2006
Interview with Peter Rosenberger, M.D.
Learning disorders Unit, Massachusetts General
Hospital, Boston, Massachusetts.
Janette Klingner, Ph.D., IARLD, Chairperson of Publications
Peter Rosenberger was one of
the charter members of IARLD.
He was born and raised in rural
western Pennsylvania, to a Penn-
sylvania Dutch family with origins
in southern Bohemia. He received
a bachelor’s degree from Haver-
ford College, completing his junior
year at the University of Munich;
a master’s degree in philosophy
from Columbia University; and the
M.D. from Western Reserve Uni-
versity. He trained in pediatrics at
the Boston Children’s Hospital, and
in neurology at the Massachusetts
General Hospital. With the excep-
tion of a three year tour of duty at
the Walter Reed Army Institute of
Research, he was on the staff of
Massachusetts General Hospital
for 40 years, retiring this year with
the rank of Neurologist and Associ-
ate Pediatrician, and also Assistant
Professor of Neurology at Harvard
Medical School. He founded the
Learning Disorders Unit at Massa-
chusetts General Hospital and was
its director for 30 years. His con-
tributions to the scientific literature
number over 80, chiefly in neurol-
ogy and experimental psychology.
Peter and Constance, his wife of
48 years, are “empty nesters” in
Winchester and East Dennis Mas-
sachusetts, with four grown children.
Their principal diversions are sail-
ing, travel, choral music, and hiking.
This interview with Dr.
Rosenberger was conduct-
ed on September 21, 2006:
Janette- What were some of your
early experiences that led you to the
field of Learning Disabilities? What
inspired you the most and helped
you maintain your interest over time?
Peter– I was in graduate school
in the mid-50s, in Philosophy at
Columbia University. During the
course of those studies it became
apparent to me that I was too much
of an engineer and not enough of a
pure thinker to continue in philoso-
phy. But my Master’s degree project
was in epistemology and so I became
very interested in how people know
and how they learn. And that led
me, once I got into medical school,
to an interest in deficits of how
people learn. I thought I was going
to pursue this in psychiatry but at
that time psychiatry was dominated
by analytic psychiatry, and that was
not a very fruitful field for scientific
investigation. So I got into neurol-
ogy, specifically into child neurol-
ogy, and my interest in the subject
continued and was very much sup-
ported by my clinical experiences
during my training in those fields.
Janette- That’s very inter-
esting, that that’s how you got
into it. What have been some of
the highlights of your career?
Peter- Some highlights of my career.
The first highlight was my labora-
tory training under Dr. Murray
Sidman at Mass (Massachusetts)
General Hospital in experimental
psychology. Murray insisted that
we forget everything we knew about
physiology and the brain, that we
treat the brain as a black box and
concentrate on the physiology of
behavior and experimental manipu-
lation. That was extremely helpful
to me as it provided me with an ex-
perimental technique that I further
expanded on when I was drafted
into the army in the late 60s and
Murray was able to get me a job
at the Walter Reed Institute of Re-
search, which at that time was a real
hotbed of experimental psychol-
ogy. That was a very exciting time.
The second highlight was when I

35
Thalamus, Volume 24, Number 1
met Bill Cruickshank in the mid 60s,
and although he was never bashful
about describing the slights he en-
countered from the medical profes-
sion, he went out of his way to reach
out to doctors, and he took me under
his wing. I was just in training at that
time, and he was really a mentor, an
encourager for me for over 30 years
until his death. Those were the im-
portant highlights in my early years.
Janette- Thank you. And
you were one of the co-found-
ers of IARLD; is that correct?
Peter- Well, not really. I don’t think
I went to the first meeting. I think I
went to the second meeting. I think
that was at Oxford University in
the mid 80s, and I’ve been to pretty
much every meeting since then.
Janette- Great, thank you.
Peter- The highlights of my later
career and really the things that keep
me going are having ideas that I’ve
long espoused gradually be taken up
by the community at large. That’s
really satisfying. One standout of
these was my early objection to the
so-called discrepancy criterion for
identifying learning disabilities. I
pointed out, time and time again,
and people got sick of hearing me
say it, that identifying a learning
disability by normal intelligence
and poor achievement is like try-
ing to tell the gender of a baby by
the color of the blanket. It will get
you the right answer frequently,
but it has nothing to do with the
essence of the problem. Learning
disabilities are aptitude deficits,
I’m very encouraged to see has
taken on and been widely accepted
in recent research. I’m particularly
encouraged by the recent research
that looks into how easily or with
how much difficulty a child can
become particularly skilled, in or-
der to identify a learning disability.
Janette- That is really interest-
ing. So what do you think of the
response to intervention model?
Peter- Well, I think that it has defi-
nite merit, as a diagnostic tool. Now,
obviously, the more sophisticated
and more effective your interven-
tion becomes, the less likely you
are to identify the disability. But
that’s OK. I mean, an aptitude
deficit, after all, is not an absolute
blockade to learning. It means that
it takes much more sensible, much
wiser teaching and intervention to
bring the skill to bear, than if the
aptitude is great. If the aptitude is
great, then the child learns while
your back is turned. But if the ap-
titude is deficient, then you have to
be a smart teacher to teach the skill.
Janette- Do yo u have any con-
cerns about RTI, or maybe cau-
tions for the field as we move
forward with RTI models?
Peter- Well, I don’t know. I haven’t
done any research myself with that
model, but the recent presentations
I’ve heard I think are very encouraging.
Janette- Great, thank you.
Peter- Another drum I’m beating
these days that I think is starting
gradually to catch on is that func-
tional imaging is really a mirror
of what the brain is doing, which
in turn, is really just a mirror of
what the subject is doing. So when
a study comes out showing that a
dyslexic kid was taught a particu-
lar method, say, taught phonemic
awareness, and there is a functional
MRI change, really the only thing
you’ve shown is that the kid has
decided to do something different
or differently. You haven’t shown
that the brain was changed. I think
that idea is starting to catch on.
Janette- That’s an interesting area,
too. Thank you. Any other high-
lights you’d like to talk about?
Peter- No, I think those are the high-
lights of my career, so far. Now that
I’ve retired from the staff of Mass
General Hospital, I’ve given up a
lot of my administrative responsi-
bility. I’m still seeing patients, and
I hope to have more time to devote
to these problems. But the IARLD
and the International Neuropsychol-
ogy Society are the organizations
that I am most excited about, and
their potential for making progress.
Janette- By th e wa y, did you
know that the next conference
is going to be in Slovenia?
Peter- Oh yes, I like Slovenia.
It’s a lovely area. You know it’s
where Marshall Tito had his sum-
mer house, and it’s just gorgeous
up there. I will be there if at all
possible. Having retired from the
hospital means I no longer have an
essentially unlimited travel budget,
so I’ll have to watch my pennies,
but I’ll definitely try to be there.
Janette- So how do you see the
development of learning dis-
abilities as both a national con-
cern and an international issue?
Peter- It’s a national concern be-
cause, of course, our society is
becoming more and more techno-
logical, and we have less and less to
offer people in the way of unskilled
labor. So people who are having
difficulty acquiring complex skills
are going to be more and more left

36 Thalamus, Fall 2006
out as the society advances. In deal-
ing with that, this is also partly an
international issue, in dealing with
the rest of the world, that sort of
expertise is more and more what we
have to offer. I mean, we don’t make
any clothes any more; we buy all our
clothes from China. What we have
to offer is information processing,
and entertainment, of course, but,
much more highly technologically
developed fields, and if we don’t
find a way to help people with lim-
ited aptitudes acquire these skills,
we’re going to have an expand-
ing force of under-utilized labor
Janette- Good point. And what about
internationally? Any more thoughts?
Peter- Well, I think we are the
leaders and I don’t think anyone
disputes that. We are the leaders in
this particular type of research and
you only have to go to international
conferences to realize that, and we
need to continue to carry the ban-
ner and encourage that research in
our own country. And we need to
continue to disperse it and to meet
with people in other countries, and
encourage their efforts in that regard.
Janette- Great, thank you. What do
you view as the critical issues fac-
ing the field of learning disabilities
today? I think you’ve addressed
that already, to some extent, but…
Peter- I think that perhaps the most
critical issue right now, and some of
our recent meetings have addressed
that, is how research translates into
practice. Research data are of great
interest and basic research has to
continue to be encouraged. Mis-
sion-related research has a very
limited role to play, and we can’t
support things like a war on dys-
lexia in the same manner as a war
on cancer. We’ve got to encourage
our researchers to think about basic
issues, but at the same time, we
need to translate that into practice
because the public doesn’t support
research if it doesn’t show up in
more effective intervention methods.
Janette- Good point. What would
you say the basic issues are in partic-
ular that we should be focusing on?
Peter- Do you mean the basic is-
sues facing research? Well, we’ve
made a lot of progress in dyslexia.
We need to focus more on some of
the others. We know woefully little
about dyscalculia. As much effort as
has been expanded on that in recent
years, we still know very little about
it. The whole issue of nonverbal
learning disabilities is, as far as I’m
concerned, a mess right now. An
awful lot of what is said about it just
isn’t justified by the data. We’ve got
to stop people from latching onto
kids with a 12-point discrepancy
between verbal and performance
IQ and calling them nonverbal
learning disabilities. It makes no
sense at all. I think those areas of
nonverbal learning, and calculation,
areas of learning that are closely
tied to motor skills… Writing is a
beautiful example of that. I think
those are the issues that excite me.
Janette- Thank you. And you’d
mentioned brain imaging ear-
lier, that we need to be careful
when we interpret the results from
brain imaging studies. What would
you say we should be looking at?
Do you have any recommenda-
tions for research in that area?
Peter- Yes, well, I think the brain
imagers, and by the way, more brain
imaging is done by psychiatrists
then neurologists these days. That
isn’t saying anything very profound,
because there are ten times as many
psychiatrists as neurologists in the
country, so that’s not a very exciting
finding, but I think the imagers are
looking at interesting things. But
we just need to be careful about
interpreting the results, especially
when large amounts of statistical
manipulation are involved. Once
you start taking third and fourth
derivatives of these findings and
translating them into colors on the
image, you start getting images that
are fairly far removed from what is
actually happening in the brain. The
brain electrical activity mapping, or
BEAM study, ran into this problem,
and really, I think, died on the vine.
It’s a lot less exciting these days
then it was 10, 15 years ago. And I
think partly because of that, because
it involved so much statistical ma-
nipulation that what you wound up
with, it was a little hard to know the
real status of some of your findings.
So I think those are the caveats for
brain imaging, but it’s very exciting.
Janette- Great, thank you.
Peter- I have to say that the
older I get, the less interested
I become in knowing where in
the brain something is happen-
ing, as opposed to why or how.
Janette- Good point. Thank you.
Any other critical issues you’d
like to mention, or should we
move on to the last question?
Peter- No, I think that’s it.
Janette- OK. Then the last question is,
“How can IARLD make a difference?”
Peter- I think two areas. One is to
encourage good research, and I
think our program committee peo-

37
Thalamus, Volume 24, Number 1
ple are increasingly vigilant in this
area, but we have to be increasingly
less willing to let old duffers like me
stand up and pontificate. And more
insistent that research or results be
delivered tersely and with a mini-
mum of expansion, and then discuss
them. I think that the meetings that
really turn me on are the ones where
real data are discussed and there’s a
chance to interact with the investiga-
tors about their findings. That’s why
the poster sessions are so good. So
that’s one thing; encourage good re-
search. And I think the second thing
is what IARLD has done so well
since it began, and that is to foster
communication among various dis-
ciplines, because that won’t survive
by itself. The natural tendency for
disciplines is to become more in-
ward looking and more defensive
of turf and prerogatives, and so any
force that fosters communication
among disciplines just has to be
pressed forward and encouraged.
Janette- Great, thank you. Any
other thoughts about IARLD
or learning disabilities?
P e t e r - I guess not.
Janette- Thank you so much.

38 Thalamus, Fall 2006
William M. Cruickshank Memorial Lecture
International Association for Research in Learning Disabilities
Loneliness, the Salutogenic Paradigm and Learning Disabilities:
Current Research, Future Directions, and Interventional Implications
Malka Margalit, Ph.D
Constantiner School of Education, Tel-Aviv University, Israel
Presented at the 30th Annual IARLD Conference 2006
July 15, 2006, Boulder, Colorado
First of all, I want to pay special
tribute to William M. Cruickshank,
who founded the IARLD 30 years
ago. On August 14, 1976, Dr. Ja-
cob Valk of the Free University of
Amsterdam, visited Dr. William
Cruickshank. They decided to form
a new organization of world-class
scientists, each committed to a re-
search career which was primarily
related to learning disabilities (LD).
The membership would be both
international and interdisciplinary
in nature. It was envisioned to be
a forum through which leading
scientists of the world could com-
municate with others of similar in-
terests regarding the diverse aspects
of LD (IARLD Newsletter, Special
Edition, 2001).
At the close of 1986, Fellows and
members of the Academy came
from the following countries:
Australia, Belgium, Brazil, Canada,
Chile, Costa Rica, Czechoslovakia,
Cuba, Denmark, Germany (East
and West), Finland, France, Greece,
Italy, Japan, Mexico, Netherlands,
New Zealand, Poland, South Africa,
Spain, Sweden, Taiwan, United
Kingdom (including Scotland and
Wales) and the United States of
America.
In 2001 John Hagen said “Bill
Cruickshank … was one of the
first scholars to recognize that LD
needed a solid theoretical basis
from which it could be viewed,
studied, and then modified. The
background and values of Bill
came together in a wonderful way
to provide ‘the jump start’ needed
to move the field ahead. This was
in the mid-1970’s, and he had two
major commitments that really
provided the impetus. One was his
recognition that LD is a syndrome
that must be approached from
all the relevant disciplines, from
neuroscience to psychology to edu-
cation. The second was his deep
commitment to bringing together
the thinking of scholars from all
parts of the world”.
He continued, “An additional
area that needs to be recognized
is bringing together theory-driven
research and best clinical practice.
The field of LD is full of practical
implications, but the contribution
that was made by the IARLD was
the recognition that we must oper-
ate from strong scientific bases, and
these must come from several of the
basic sciences”.
I still remember the warm wel-
come of Bill and Dorothy Cruick-
shank and Doris Johnson when I
participated for the first time in the
IARLD conference. I felt lonely,
not knowing any of the participants.
They approached me, and helped
me feel at home from the beginning
of my membership in the Academy.
I am thankful for the invitation to

39
Thalamus, Volume 24, Number 1
present the Cruickshank Memorial
Lecture.
The goals of my lecture are:
1. To present theory and research,
reflecting new challenges in the
loneliness conceptualization
and the implications of the Sa-
lutogenic paradigm with a focus
on experiences of children with
learning disabilities (LD):
a. Negative and positive per-
spectives
b. Interpersonal and personal
aspects
2. To discuss risks, promises, and
interventional implications
related to current trends in
loneliness studies within dif-
ferent contextual perspectives:
schools, families, and commu-
nity environments, reflecting
cultural differences.
3. To consider future research
challenges.
LONELINESS AND
LEARNING DISABILITIES
Bryan’s pioneering studies (Bryan,
1974, 1976) initiated the research
focused on the social difficulties
experienced by students with LD. A
long list of comprehensive studies
emerged afterwards. To mention
just few of them, research reported
students’ difficulties related not
only to the children’s academic
achievements (i.e., reading and
mathematics), but also detailed
their social difficulties, originat-
ing in their information processing
deficits, expressed in children’s so-
cial status (rejection and reciprocal
nomination) and distressed expres-
sions related to their interpersonal
functioning (Bryan, 1999; Chap-
man, 1988; Donahue & Pearl, 2003;
Hamilton, Fuchs, Fuchs, & Roberts,
2000; Margalit & Al-Yagon, 2002;
Pearl, 1992; Stone & May, 2002;
Swanson, 1996; Tur-Kaspa, 2004;
Wiener, 2002). Before pointing
to the current trends in loneliness
research among students with LD
and future challenges, I would
like to start by calling attention to
classic definitions of what loneli-
ness is. Moreover, I would like to
describe the significance of this line
of investigation. In essence, why
is it important to study children’s
loneliness?
Classic Definitions:
What is Loneliness?
Classic definitions focused at-
tention on the subjective qualities
of the distressed emotional experi-
ence. Peplau and Perlman (1982)
defined loneliness as the unpleas-
ant experience when individuals
Figure 1
Different aspects in loneliness research

40 Thalamus, Fall 2006
perceive a discrepancy between the
desired and accomplished patterns
of their social networks. Asher et al.
(1990) whose studies initiated the
examination of children’s loneli-
ness, proposed that the loneliness
experience is a global indicator of
dissatisfaction from the quality and/
or the quantity of individuals’ social
interrelations (Asher, Parkhurst,
Hymel & Williams, 1990). Weiss
(1973) in his classic monograph,
rejected the global approach to
loneliness conceptualization, and
proposed the bimodal construct of
loneliness, differentiating between
two types of distresses:
1. Emotional distress emerging as
a result of the lack (or the loss)
of intimately close persons (best
friends or loved ones). The stud-
ies of emotional loneliness were
examined within the attachment
and the secure-base framework,
focusing attention on models of
early relations between infants
and their caregivers (Mikulincer
& Florian, 1998).
2. Social distress emerging as a
result of the lack (or the loss)
of satisfactory connections to
significant social groups such as
networks of friends, colleagues,
etc. The studies of social loneli-
ness were examined within the
conceptualization of peer rela-
tions, social status (peer nomi-
nation/rejection) and social
skills (Asher & Paquette, 2003).
The unsolved debate between
treating loneliness as a global,
complex (multivariate) index of
distress or as the bimodal con-
struct of loneliness did not in-
terfere with acknowledgement
of the following generalized
characteristics that have been
commonly accepted within the
classic definitions (Margalit,
1994):
1. Loneliness is a distressing
negative emotional experi-
ence.
2. Loneliness is a subjective
evaluation related to cogni-
tive processing (Individuals
may stay alone without
experiencing loneliness yet,
they may feel lonely even in
a crowd).
3. Loneliness is a shared com-
mon phenomenon, regard-
less of its subjective quality
(Individuals in different cul-
tures understand similarly
the meaning of the distress
– “I am lonely”, even if they
cope with it differently).
4. Loneliness occurs within
the context of social rela-
tions reflecting a withdrawal
from interpersonal con-
tacts.
5. Loneliness is based on un-
satisfied basic psychological
needs for relatedness and/or
closeness.
Loneliness and Solitude
In contrast to the negative affect
experienced during loneliness,
solitude (a wish to stay alone) is
considered a different affective
experience, unrelated to distress-
ful emotional reactions. Solitude
has been described as a positive
emotional experience, providing
an opportunity for rest from stress-
ful realities and anxiety-provoking
people, or providing an enjoyable
time alone, devoted to leisure ac-
tivities, thinking, and creative work
(Buchholz & Catton, 1999).
The Significance of Loneliness
Research: Why is it Important to
Study Loneliness?
Regardless of the conceptual de-
bates on loneliness, the importance
of understanding this emotional
experience was commonly accepted
among researchers and clinicians,
not only as an indicator of life qual-
ity or due to the tendency to become
(through developmental processes)
a stable personality characteristic,
but especially because of its rela-
tions with short and long-term stress-
related health risks (Cacioppo et
al., 2000; Cacioppo et al., 2002;
Cacioppo, Hughes, Waite, Hawkley,
& Thisted, 2006; Koolhaas, de Boer,
& Buwalda, 2006). Without enter-
ing into the detailed description of
the biological processes, the above
mentioned studies accentuated
the contribution of stress to health
risks and documented the relations
of loneliness experiences with
increased levels of stress, point-
ing to different mechanisms that
may provide explanations for the
short-term as well as the long-term
impact of loneliness on health and
well-being.
In addition, the knowledge emerg-
ing from recent genetic studies
has identified the genetic origin of
loneliness and further our awareness
of the complexity of this experience.
It focuses attention on interactions
between genetic and environmental
factors in different contextual con-
ditions, cultures, and different age
groups (Boomsma, Cacioppo, Slag-
boom, & Posthuma, 2006; Booms-
ma, Willemsen, Dolan, Hawkley, &
Cacioppo, 2005; McGuire & Clif-
ford, 2000). These studies related
loneliness with health risks. The
research that will clarify develop-
mental processes may identify ap-
proaches for empowering individu-
als to cope effectively, in different
contextual conditions, with this
aversive affective experience. This
should be done at early develop-
mental stages before it becomes a
stable and chronic affective style.
Stress often has been treated in
research as a single mechanism
(Boomsma, Cacioppo, Slagboom,
& Posthuma, 2006). In fact, it rep-
resents a family of mechanisms, and
each one comprises a different set of
operations that could contribute to
higher levels of stress in the lives of
lonely more than the non-lonely in-
dividuals. In order to further clarify
the nature of genetic-environmental

41
Thalamus, Volume 24, Number 1
interactions, Cacioppo et al. (2003)
suggested four assumptions that
account for the increased health
risk in different profiles of lonely
individuals (Cacioppo, Hawkley, &
Berntson, 2003):
1. Added-stress hypothesis: Lone-
ly individuals experience ad-
ditional (additive) stress which
accompanies distressing per-
ceptions related to their social
difficulties (such as rejection by
others and peer exclusion).
2. Differential-exposure hypoth-
esis: Lonely individuals are
exposed to stressful events
more frequently than non-lonely
individuals, and their regula-
tory mechanisms are challenged
more often.
3. Differential-reactivity hypoth-
esis: Lonely individuals are
exposed to various stressors that
may not occur more frequently
than the stressors experienced
by non-lonely individuals, but
these stressors are more intense,
eliciting higher levels of dis-
tressed affective activation.
4. Differential-stress buffering hy-
pothesis: Lonely individuals do
not experience more frequent or
more intense stressors, but they
lack social buffers to reduce
their distress (i.e., they have
fewer people to whom they can
turn for sharing or assistance).
Therefore these stressors, are
comparable in frequency and
intensity to those experienced
by non-lonely individuals, and
they tend to be perceived as
more severe.
These four assumptions may oper-
ate separately in different profiles
of lonely individuals or interact
simultaneously, predicting the
elevated experience of stress that
may lead to increased health risks.
It can be concluded that the unfold-
ing pathophysiological processes
that risk health are triggered by the
stress emerging from loneliness
experiences. They can be viewed
as the consequence of multiple
physiological systems activated
by a single or multiple interacting
processes. In conclusion, the im-
portance of examining loneliness
emerged from the consideration of
loneliness as a negative experience
related to dysfunctions and difficul-
ties and predicting health risks.
A different conceptual approach
considered loneliness not as a nega-
tive and challenging experience, but
rather as a structural dimension of
existence that can be viewed either
as a negative or a positive experi-
ence (Nilsson, Lindstrom, & Naden,
2006). Indeed, in our modern soci-
ety, conflicting interpersonal trends
are emphasized. On one hand is
the increasing and urgent need for
constant connectivity (expressed in
behaviors such as regular checking
of e-mails, frequent contacts with
cell phones in public places, sending
instant messages etc). Cell phone
companies reflect these trends by
announcing “you are never alone”
on their advertisements. On the
other hand is the recognition for
intensified individualism wishes,
independent mind-set trends, and
increased opportunities for soli-
tude in living, working, and leisure
activities. Western industrialized
society was often labeled “The Age
of Loneliness” (Moody, 2001),” in
which the phenomenon of loneli-
ness may be considered almost epi-
demic and was judged as a negative
and even an embarrassing condition
(Killeen, 1998). Loneliness may
be understood as a structural di-
mension of existence that may be
increased or decreased in various
conditions (Gierveld & Tilburg,
2006; Nilsson, Lindstrom, & Naden,
2006). Thus, it is not surprising that
loneliness has become a common
experience in our modern society,
and the question of if it can it be
seen as an epidemic needs further
clarification. Following this line of
thinking, loneliness may be viewed
as either a good or a bad experience,
and closely related to trust/distrust,
developmental climates, and norma-
tive social pressures of relatedness
and belonging in different environ-
ments and cultures. It is beyond the
goals of this presentation to discuss
in-depth the conclusions of these
discussions. However, they present
a conceptual dilemma with inter-
vention challenges.
Developmental Aspects
The initial developmental dilemma
is “Can young children understand
the meaning of loneliness?” Re-
search has demonstrated that from
preschool age-stage children are
able to understand what loneliness
is (Asher & Paquette, 2003; Mar-
galit, 1998). Studies performed in
different countries including the
United States of America, Israel,
Greece and Canada show consis-
tently that young children experi-
ence loneliness even before enter-
ing school, and they were able to
identify those situations in which
they felt lonely. Some children
(especially girls) were able to dif-
ferentiate between loneliness and
solitude (between voluntary and
involuntary aloneness) (Galanaki,
2004; Kirova, 2003).
Through developmental stages,
loneliness may emerge from differ-
ent frustrations such as an unsatis-
fied need for intimate relationships
with good and close friends, and/or
as a reaction to rejection by desired
social groups. Peer relations have
been considered an important chal-
lenge for children during different
developmental stages. Children who
have difficulties in establishing sat-
isfactory peer relations were at risk
for experiencing loneliness (Ladd,
1999, 2006). Several concepts were
often examined including popularity
and friendship. Their relations to
adjustment indexes and loneliness
indicated their complex nature. In
a study that examined the relations
between peer ratings and self-report
loneliness measures, a mediational

42 Thalamus, Fall 2006
hypothesis was confirmed (Nangle,
Erdley, Newman, Mason, & Carpen-
ter, 2003). Although popularity did
not directly impact the adjustment
indexes, it strongly predicted friend-
ship, which, in turn, affected depres-
sion through its strong association
with loneliness. It appears that for
the development of interpersonal
relations popularity is important for
setting the stage, but only the dy-
adic friendship experiences directly
influence the feelings of loneliness
and depression.
The study of children with learning
disabilities (Margalit, 1994; Pavri &
Monda-Amaya, 2000; Sabornie, Ev-
ans, & Cullinan, 2006) revealed that
their personal characteristics affect
their loneliness experience, and may
also make it more difficult for them
to cope with these aversive feelings.
Studies performed in several differ-
ent countries revealed that students
with LD experienced higher levels
of loneliness (Valas, 1999). This
experience has been often a true
reflection of realistic social dif-
ficulties related to their poor social
network, low social status and peer
rejection (Valas, 1999). Four main
factors have been often identified
as predicting social difficulties and
loneliness experiences among chil-
dren with learning disabilities:
1. The knowledge deficit - children
have not acquired the age-ap-
propriate knowledge needed for
developing satisfactory social
relations, pinpointing attention
on their deficient social cogni-
tion (Pearl, 1992).
2. The performance deficit - chil-
dren have difficulties in trans-
forming their age-appropriate
social knowledge into effec-
tive interpersonal behaviors
(Vaughn, Zaragoza, Hogan, &
Walker, 1993).
3. The solitude struggle of children
with LD who find staying alone
more difficult than their peers
(Margalit, 1991)
4. The behavioral style of lonely
and rejected children may add
to the children’s experiences of
alienation through accepting the
reputation of isolated individu-
als (Margalit, 1994). Their inter-
personal approach and nonver-
bal communication reveal their
alienated self-concept as well as
their beliefs in their inability to
change this distressing situation
and to develop satisfying social
relations.
In conclusion, research consis-
tently showed that children and
adolescents with LD are at a greater
risk for developing loneliness dis-
tress and related interpersonal style.
However, studies focused attention
on groups of individuals with LD
who did not experience more lone-
liness than their peers. In order to
explore factors that may predict
effective coping with loneliness and
social competence, the salutogenic
paradigm will be presented in order
to account for the multidimensional
role of personal and systemic re-
silience predictors (academic and
social challenges).
Salutogenesis –
The Search for Health
Antonovsky (1987) coined the
term “salutogenesis,” from salus,
the Latin word for health and
well-being to emphasize the focus
of his model on health rather than
on disease (i.e., pathogenesis). He
proposed an explanation to account
for the unexpected fact that some
people stay relatively well despite
major challenges in their lives. The
Salutogenic model aims at exploring
the origin of health rather than ex-
plaining causes of disease, rejecting
the dichotomous classification of
people as healthy or diseased. The
Salutogenic paradigm examines fac-
tors that contributed to the dynamic
movement of individuals along the
health ease/dis-ease continuum.
The ability to use internal (per-
sonal) and external (contextual) re-
sources for coping with challenges
such as loneliness was conceptual-
ized as a Sense of Coherence (SOC)
(Antonovsky, 1987). The SOC helps
individuals to understand, manage
and find meaning in their world.
Life experiences, which are charac-
terized by the possibility of taking
part in shaping future outcomes in
terms of hopes (Snyder, 2002) may
support the development of a strong
Sense of Coherence.
In order to exemplify the role of
these positive personal aspects in
explaining loneliness, a recent study
compared students with LD to their
nondisabled peers, exploring the re-
lations between academic achieve-
ments, SOC, loneliness, and hope
and effort (Lackaye & Margalit, in
press). The sample of this study
consisted of 571 seventh grade
students (292 boys and 279 girls)
from 7 schools (124 children with
LD and 447 non-LD children). As
could be expected, students with LD
(as a group), showed lower levels of
achievement, reported less effort in-
vestment, lower scores of academic
self-efficacy and decreased Sense of
Coherence. They also experienced
lower positive mood and less hope.
Their average scores indicated
higher levels of loneliness and nega-
tive mood than the average scores
of their peers. However, in order to
further clarify these differences, and
in order to control for the possible
impact of academic achievements
on students’ self perceptions, the
comparisons were performed be-
tween the group of students with LD
and their peers who were divided
into four different achievement
groups. The results showed a more
differentiated profile.
The socio-emotional profiles of
the students with LD were quite low
- similar to the low and low-average
groups, even though they reached
higher academic achievement than
the low-average group of students
without LD. It seemed that the aca-
demic success of students with LD
was achieved through struggle and

43
Thalamus, Volume 24, Number 1
sometimes frustrations, reflected
by their increased experience of
loneliness and negative mood. The
results also showed the role of hope
in predicting the effort investment
among the group of students with
LD. This study demonstrated the
importance of examining positive
personal characteristics in explain-
ing students’ effective coping as
well as their loneliness. The results
emphasized the need to move be-
yond academic intervention, and
to sensitize teachers and parents to
the emotional cost of the children’s
effort investment and frustrations
resulting in increased loneliness
experience. For instance, during in-
terviews that were performed during
the data collection of this study, a
student with LD complained spon-
taneously “Indeed I got good grades
but I don’t have a life… I work end-
lessly”. Even though loneliness is a
subjective experience, the study of
contextual conditions is critical for
understanding their interactions
with the individual’s positive and
negative characteristics for predict-
ing the alienation experiences.
Contextual Conditions:
School and Home
Research has focused attention
on the interaction role of contextual
conditions for understanding loneli-
ness. Peer relations and friendship
connections were often conceptual-
ized as reciprocally related to the
loneliness experience (Margalit,
1994). These social connections
reflected the quality of the inter-
personal climate in educational en-
vironments. In order to examine the
role of special education placement
in explaining loneliness experience
(Wiener & Tardif, 2004), two edu-
cational placements were compared.
Children with LD reported higher
levels of loneliness, fewer reciprocal
friends and lower quality of friend-
ship relations. It was expected that
children in self-contained classes,
among peers who experience similar
difficulties, would experience less
loneliness. Yet, children in inclusion
classes reported lower loneliness
levels, had more satisfying relation-
ships with their best school friends,
and had fewer problem behaviors
than children in self-contained spe-
cial education classes. Children in
self-contained classes have the same
number of friends, yet experienced
more loneliness, perhaps because of
the poorer quality of their friendship
relations.
This study demonstrated the need
for in-depth examination of social
climate factors in different learning
contexts in order to enable children
to develop meaningful social rela-
tions and behavioral adjustment.
The naïve expectations that chil-
dren in self-contained classes will
experience lower levels of loneli-
ness due to the smaller and more
homogenous group of peers were
not verified. A more differentiated
approach is needed to examine so-
cial predictors in school contexts
in order to identify critical factors
in school environments that will
empower children in developing
meaningful friendships and coping
with loneliness.
Another important factor in edu-
cational systems that predicts chil-
dren’s experiences of loneliness is
their interrelations with their teach-
ers. Ginott (1978) stated in his book
Teacher and Child, “As a teacher, I
possess tremendous power to make
a student’s life miserable or joy-
ous. I can be a tool of torture or an
instrument of inspiration” (p. 7). In
order to examine the role of students’
relations with their teachers as
predictors of loneliness (Al-Yagon
& Margalit, 2006), the loneliness
reports of 266 third graders with
reading difficulties were examined.
This study was performed in schools
that provided teachers of third grade
students with additional teaching
time dedicated for helping students
with reading difficulties in their
classes. These children appraised
their teachers as “available” (i.e.,
providing needed help and instruc-
tion) similarly to students with
normative reading achievements.
However, they also rated their
teachers as more rejecting (i.e., “My
teacher tends to complain about me
to other adults – teachers, my par-
ents”) than reported by their peers.
Children’s appraisal of their rela-
tions with teachers was related to
feelings of loneliness. It should be
remembered that these are the sub-
jective experiences of the students.
These children felt that whenever
they needed help, the teachers were
ready and available to provide the
necessary help. However, they felt
rejected by their teachers, distanced,
and this was a source of additional
burden. Further studies are needed
to clarify the interpersonal cues that
children considered indicators of
rejection and impatience.
The family context provides an
important understanding of the de-
velopment of loneliness experiences.
Children learn their first social
interactions in their families with
parents and siblings (Cook, 2001).
The amount of cohesion and support
among family members, style in
communicating emotions, and pa-
rental social activities provide an ex-
ample and model for their children’s
interpersonal style (Margalit, 2005).
Several studies reported that the
family structure (Jones, Carpenter
& Quintana, 1985; Uruk & Demir,
2003) was a predictor in the devel-
opment of loneliness in the family.
They found that families may have
both a direct and an indirect effect
on adolescents’ peer relations.
Research that compared the family
climate among families of children
with and without LD, reported a
clear increase in parental stress for
families of students with LD. It is
not surprising that many parents of
children with LD reported feeling
exhausted, less able to participate
in social activities, and often feel-
ing more lonely. Family members
reported less supportive relations
and fewer opportunities for open ex-

44 Thalamus, Fall 2006
pression of feelings (Margalit & Al-
Yagon, 2002; Margalit & Heiman,
1986). Such a family environment
does not provide satisfactory sup-
port for initiating companionship,
or modeling close interpersonal
relations to promote effective cop-
ing strategies with loneliness. We
have to be aware that being a par-
ent to a child (children) with LD is
a demanding role, challenging the
personal strength of parents. Many
times these children have a more
difficult temperament, and their
mothers reported a lower sense
of personal coherence and lower
family cohesion (Al -Yagon, 2003).
Research (Al -Yagon, 2003) showed
that early difficult interactions with
mothers contributed at a later age-
stage to the children’s higher levels
of loneliness and their lower self
confidence (lower Sense of Coher-
ence).
The study of relations between
the loneliness experience among
children with LD and their family
climate in China (Yu, Zhang, & Yan,
2005) furthered our understanding
of the complex interactions between
individual and systemic factors in
different cultures. Similar to earlier
outcomes found in different coun-
tries, children with LD in China
reported higher levels of loneliness,
lower levels of peer acceptance,
and showed negative correlations
between these measures. Surpris-
ingly, the correlations between
family functioning and children’s
loneliness were not significant; yet,
significant relations were found
between family functioning and
children’s social status. Children’s
loneliness was related to their social
status, and only indirectly to family
functioning. More studies are need-
ed to examine in depth the interest-
ing results that focused attention on
the interrelations between family
functioning, social competence and
loneliness in different cultures.
Siblings may have a unique role
in modeling and promoting social
competence of children with LD.
The potential benefits of sibling sup-
port warrant a closer examination
of the role of loneliness involved
in sibling relations. The study of
siblings social support revealed
that it was related to psychological
adjustment, lower loneliness, higher
self-esteem, and compensated for
fathers’ and peers’ low support (Mi-
levsky, 2005). The consequence of
positive and negative relationship
properties with siblings and friends,
and the joint effects of multiple
relationships (Sherman, Lansford,
& Volling, 2006) call for in-depth
examinations of the wide-ranging
issues involved in sibling relations
prediction of social competence and
loneliness experience. Surprisingly,
the role of siblings of children with
LD was not the focus of research,
until recently.
It can be concluded that loneliness
reflects the joint impact of personal
characteristics and self perceptions
as well as interpersonal relations.
The study of relations with peers,
teachers and parents in different
contextual conditions may further
our understanding of the nature
of loneliness, calling attention to
the impact of different cultures and
attitudes towards understanding the
meaning of social connections in
different communities.
Loneliness in Different Cultures
Socio-cultural contexts, different
attitudes and social expectations
towards social relations may have
important roles in predicting lone-
liness. In addition, the expression
of loneliness may differ across
cultures. In societies that emphasize
the centrality of the group cohesion,
or the fundamental value of indi-
vidualization and privacy, the lone-
liness experience may be related
differently to contextual conditions.
However, research reported that
the relations between social capital
aspects (such as perceptions of the
local community, social support
and social networks) and loneliness
were not simple or direct (Fealy,
2006; Lauder, Mummery, & Shar-
key, 2006). Studies that examined
patterns of peer relations, social
behaviors, peer-group affiliation,
family functioning and loneliness
experiences showed similarities and
differences across cultures such as
Turkish, Chinese, Greek and South
American (Chen et al., 2004; Rock-
ach, Orzeck, Moya, & Exposito,
2002; Uruk & Demir, 2003; Valdiv-
ia, Schneider, Chavez, & Chen,
2005). This is a challenging line of
research, and it is frustrating that
only few international studies have
focused attention on the loneliness
of individuals with LD, and that no
comparisons among cultures were
found. Future studies may examine
how the difficulties of children with
LD interact with their cultural atti-
tudes towards families and friends,
relatedness or autonomy, predicting
their social satisfaction or distress.
In addition, the internet, as a new
developing culture may provide an
additional insight to the loneliness
experience.
Loneliness and Internet Culture
The Internet is considered a social
medium for many children, enabling
their communication and prompting
the formation of personal relation-
ships (Cole et al., 2004). A survey
among 687 adolescents (Peter &
Valkenburg, 2006), examined the
impact of Internet communication
and the role of background variables
(i.e. age, gender, social anxiety,
loneliness, need for affiliation) in
explaining the differences in per-
sonal relationships. They reported
that younger, socially anxious and
lonely adolescents value more
strongly the controllability charac-
teristics of internet communication
and perceive it as broader, deeper
and more reciprocal than older peers
who were less anxious. Research
(Dyson, 2005) also documented
the empowerment and supporting
functions of forums and discussion

45
Thalamus, Volume 24, Number 1
boards, enabling personal disclo-
sure and sharing emotional experi-
ences. These messages reflected the
trust and the emotional closeness of
the participants, challenging their
loneliness tendencies. Yet the study
of relations between loneliness and
Internet communication did not
provide clear-cut answers.
For students with special needs,
the virtual communication can be
viewed as an additional possibility
for inclusion. Several studies were
performed in order to examine the
behavior of students with LD on-
line, and to explore their inclusion
opportunities in this environment
(Margalit, 2004). The online be-
havior of students with and without
LD was compared. The results dem-
onstrated that adolescents with and
without LD often use internet for
communication, and no significant
differences were found in the quan-
tity of usages (in terms of hours per
day or week among groups). Both
groups of children and adolescents
increased their usages of internet
from year to year. However, the
role of this virtual communication
in relation to loneliness experience
differentiated between groups.
Negative correlation between lone-
liness and the use of the internet was
found only for the group of students
with LD (for the non-LD individu-
als – a nonsignificant correlation
was found). Narrative analysis also
revealed that the online communica-
tion and virtual friendships were es-
pecially valuable to individuals with
LD. The internet enables children to
present themselves in anyway they
wish, to disclose freely their emo-
tions in their narratives, and to not
feel limited due to their difficulties
(“everybody wrote with poor gram-
mar and spelling mistakes online”)
in their connections with peers.
However, several students with LD
wrote shorter sentences than their
peers and found the communication
an additional challenge.
For research purposes, the inter-
net provides unique opportunities
to listen to the authentic voices
of individuals with LD, how they
present themselves, their concerns
and hopes (Raskind, Margalit, &
Higgins, (in press)). The study of
the virtual culture among students
with LD is a new area of research
that may challenge conventional
methodologies, and initiate ethical
dilemmas, yet may enhance our
understanding of the children’s
emotional world, and instigate new
approaches of intervention to pro-
mote meaningful interpersonal rela-
tions, to search for bridges between
virtual and educational environ-
ments, and to challenge loneliness
experiences.
Conclusions and
Scientific Challenges
Past research examined children’s
loneliness as related to their social
status, social difficulties and com-
panionship qualities. Current stud-
ies have proposed comprehensive
multivariable approaches that em-
phasized the joint roles of academic
and social challenges and how they
interact with self-perceptions and
personality aspects, calling at-
tention to resilience predictors in
explaining adjustment versus alien-
ation and solitude. Future research
may account for cultural dynamics,
examine in-depth international stud-
ies and societal trends of changes in
family and school structures. Stud-
ies may also examine students’ em-
ersion in virtual communities, and
the identification of processes may
help clarify the existential dynamics
of loneliness, and predictors of resil-
ience trends. Only systemic research
may shed light on the ongoing
debate of whether information tech-
nologies and mobile connections
may hold a promise to empower
social competence for children
with LD, or emphasize their defi-
cient social functioning. In order to
reach meaningful answers, studies
have to move from global biases to
individualized and culture-sensitive
knowledge, how virtual connectivity
and cultural systemic changes may
interact with the increasing needs
and expended opportunities for
connectedness among children with
LD. This will have implications
for preventive policy-making and
future educational interventions.
In addition, the Salutogenic
paradigm examines factors that
contributed to the dynamic move-
ment along health ease/disease
continuum. While the experience
of loneliness can be emotionally
destructive and is associated with a
range of physical and psychologi-
cal pathologies, it is important to
recognize that loneliness is a part
of the human condition (Lauder,
Mummery, & Sharkey, 2006) and
may have a protective function in
human evolution. Maybe, through
increased awareness for the risks
associated with social isolation, an
opportunity will be developed to
promote preventive and intervention
actions that are related to seeking
proximity to others (Kileen 1998).
Loneliness research has to avoid
using a pathological model, which
seeks a cause, defines symptoms
and prescribes prevention or a
treatment. By extending the tradi-
tional loneliness conceptualization
that examined the interrelations
between personal distress and
interpersonal difficulties, the sa-
lutogenic paradigm proposes a
comprehensive understanding to
empowering opportunities that may
be translated into effective interven-
tion approaches. Teaching hopeful
thinking for individuals with LD
may direct the search for developing
effective interventional approaches
that will promote social competence
and at the same time enable them
the choice to move from loneliness
distress to solitude experience.
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49
Thalamus, Volume 24, Number 1
INTRODUCTION
Since the implementation of the
Rehabilitation Act of 1973 and its
signature provision Section 504,
individuals with disabilities have
taken on increased responsibilities
for their own disability. More-
over, this shift in ownership was
cemented with the passage of the
Americans with Disabilities Act
(ADA) in 1990 and its subsequent
implementation in 1992. At its
signing then President George H.
W. Bush proclaimed the end of an
era of “paternalism” for persons
with disabilities and the beginning
of a new era moving toward “em-
powerment”. Embedded within the
legislation and consistent with the
new philosophy of service delivery
was the concept of self-advocacy
for all persons who were disabled.
Self-advocacy does not reach its
potential when its components are
not fully understood, however. The
most prominent components self-
knowledge, self-awareness, self-
disclosure are complex. The “trig-
ger mechanism”, self-disclosure,
puts the process in motion. Disclo-
sure has been described by Lynch
& Gussel (1996) as “an intended
release of personal information by
individuals regarding their tastes,
interests, work, money, education,
attitudes, opinions, body and per-
sonality. Moreover, the content and
timing of self-disclosure are im-
portant and potentially have an im-
pact on outcomes (e.g., determine
how an individual is perceived
and how corresponding requests
are treated)”. p.354. Therefore
the manner in which it is done it
of utmost importance. Moreover,
self-disclosure becomes even more
complicated when applied to spe-
cific populations of persons with
disabilities and to varying stages of
development (Gerber, 1993).
In the case of adults with learning
disabilities there are disability-spe-
cific and stage-specific develop-
mental issues. Generally speaking,
adults with learning disabilities
have a beyond-school prognosis of
competitive employment, indepen-
dent living, and community (civic
and spiritual) involvement (Ger-
ber & Reiff, 1994). Adults with
learning disabilities proceed from
school-to-work and assume adult
roles consistent with their own
values, goals, and circumstances.
However, there is a marked differ-
Acceptable Loss and Potential Gain:
Self-Disclosure and Adults with Learning
Disabilities
Paul J. Gerber
Abstract
The process of self-disclosure for adults with learning disabilities is discussed via the ndings of a qualitative study of
70 adults with learning disabilities from eight areas of the United States. The dynamics of the dichotomy of acceptable
loss versus potential gain are explained as they relate to personal risk assessment in a variety of adult settings. Further-
more, ndings indicated that it is difcult to generalize about the process of self-disclosure because it is often context-
specic, sometimes being driven by provisions of law such as Section 504 of the Rehabilitation Act and the Americans
with Disabilities Act, and other times playing out in less structured informal adult contexts.

50 Thalamus, Fall 2006
ence in the adult learning disabled
experience. Adults are no longer
exposed to the culture of school (K-
12), where learning disabilities is
accounted for by law in all its pro-
visions and procedures. They live
in a beyond-school world where
learning disabilities has been heard
of, but where little understanding
and specificity can be assumed.
Moreover, the invisibility of learn-
ing disabilities is often confusing
and misunderstood by the lay pub-
lic (Gerber, 1992; Price & Gerber,
2001).
Invisibility as the “wild card”
Unlike the culture of school
where a student with learning dis-
abilities is identified and given
law-mandated special education
services, the decision to be or not
to be learning disabled in adult-
hood has layers of complexity that
have advantages and drawbacks
(Price, Gerber & Mulligan, 2005).
Without a doubt, invisibility can
be thought of as a “wild card” that
has a myriad of potential short
and long term uncertain outcomes.
These outcomes are driven by a
complicated set of variables in any
given social context. The key is a
plethora of dynamics that have very
important choice points being both
contextual and situational. The
contexts are many in adulthood:
education, employment, family,
community, social and leisure. The
circumstances are infinite in nature,
consistent with the realities of
adult functioning. Therefore, the
question arises – In what contexts
and under what circumstances do
adults with learning disabilities
disclose to others that they are
learning disabled?
There are two contexts in which
adults with learning disabilities
must disclose their learning disabil-
ity for legally mandated provisions.
In the context of post-secondary
education, if adults with learning
disabilities want to receive accom-
modations in admissions testing,
learning, course examinations, and
exit tests (if mandated by school
or profession) they must disclose
their learning disability to utilize
Section 504. Reasonable accom-
modations in employment can only
be accessed via the ADA through
self-disclosure either for pre-em-
ployment testing, at job entry or
any time thereafter. The remaining
four contexts are not tied to law
and have both benefits and risks.
Despite the benefits from self-dis-
closure, it must remembered that
self-disclosure of a learning dis-
ability is a choice, in fact a very
personal choice because of the
invisibility factor.
The purpose of this paper is to
examine self-disclosure in adults
with learning disabilities in mul-
tiple contexts. Moreover, it is to
explore the underlying dynamics
of when and why self-disclosure is
used and not used. It is part of a
larger research study on disclosure
which found themes pertaining to
“secrets” (Price, Gerber and Mul-
ligan in press), and stigma (Price,
Gerber and Mulligan, in review).
METHOD
Design
The focal point for this study was
an in-depth investigation of inter-
related research questions. They
were: (1) How do adults with learn-
ing disabilities view their disabili-
ties in terms of self-disclosure, es-
pecially in different adult contexts
(i.e., employment, family/home,
postsecondary education/training,
recreation/ leisure, community, and
partnerships/friendships? and (2)
What factors explain the complex
process of self-disclosure of adults
with learning disabilities?
The rationale to use a qualitative
research design was justified in sev-
eral ways. The interviewers were
used as the tools for data gathering,
analysis, and summarization. One
of the main purposes of the study
was to uncover answers to the re-
search questions and discover new
insights instead of testing a specific
hypothesis about the relationship
between learning disabilities and
adulthood. Also, a qualitative
design would emphasize examin-
ing original phenomena in-depth
(e.g., learning disabilities and self-
disclosure) through an analysis of
the interviewees’ vocabulary and
belief systems (Maxwell, 1996;
Merriam, 1998; Miles and Huber-
man, 1994).
Study participants and selection
The researchers used purposive
sampling techniques to recruit a
sample of 70 adults with verified
learning disabilities. These indi-
viduals resided in eight areas of
the United States (i.e., California,
Florida, Kansas, Maryland, Mas-
sachusetts, Minnesota, Texas, and
Washington). Site coordinators
were also recruited from the eight
areas. They were local profession-
als (researchers, university-based
service providers, college profes-
sors) who had extensive expertise
and experience with adults with
learning disabilities. (Details about
these individuals are available in
the acknowledgements.)
Participants were recruited in
a variety of locations (i.e. schools,
public and private agencies, vo-
cational training sites, adult basic

51
Thalamus, Volume 24, Number 1
education programs, etc.). All
site coordinators were given an
extensive packet of data collection
procedures as well as a contact
number at Temple University to ask
questions or to request assistance.
The initial contact pool was ap-
proximately 150 individuals of
which 70 adults with learning dis-
abilities were interviewed. The par-
ticipants completed confidentiality
forms and discussed the 20 dollar
compensation they would receive
at the completion of the interview.
Also, each participant was given
contact information from Temple
University as well as local sources
of support if follow-up was neces-
sary.
Two primary criteria were
mandatory for study participation.
First, each participant must have
had a formal learning disabilities
diagnosis. They provided materi-
als documenting specific learning
disabilities to the site coordinators.
Diagnosis of the participants was
done in elementary and second-
ary schools, as part of Adult Basic
Educational (ABE) training, as
disability verification through
vocational rehabilitation services
as well as testing through private
schools or agencies. Second, each
individual must have had past or
current employment experience.
Description of sample
The sample of adults with learn-
ing disabilities consisted of 39
males and 31 females with an age
range from 17 to 58 years. Formal
education varied widely. Fifty-two
of the adults interviewed earned a
high school diploma (e.g. 29 males
and 23 females). Sixteen of the
participants of the study did not
graduate from high school (nine
males and seven females). At the
time of the interviews two adults
with learning disabilities had
earned their GED and others were
in the process of completing their
GED.
Data collection and analysis
The study was completed in
three research phases which took
approximately one and one-half
years to complete. Phase One was
proceeded by a pilot project that
used the Gerber and Price Interview
Protocol (Gerber & Price, 2005).
The preliminary work involved 18
adults with learning disabilities
who met the same sample criteria
discussed in the previous section.
(For more information on this
work, see Gerber, Price, Mulligan,
& Williams, 2005).
As part of the pilot, the protocol
was revised as necessary (e.g., four
similar sections were conflated into
a clearer single section and three
questions were rewritten
for minor content clarification).
The revised protocol was then used
as a foundation for Phase One.
This phase stressed collaborating
with site coordinators to recruit
subjects and to familiarize them
with the final Gerber and Price
Interview Protocol.
Phase Two entailed simultaneous
data collection at all eight research
sites, and subsequent data analysis.
Individual interviews were done
where the participants felt com-
fortable discussing their learning
disabilities (i.e., researcher’s
office, participant’s home or vari-
ous public locations). Interviews
varied in length from 45 to 120
minutes. Afterward, each coor-
dinator examined the interviews
to add their first impressions, any
new insights obtained, and a brief
summary of each adult’s responses.
All completed field notes were
mailed to Temple University where
a second review of each interview
was conducted. For instance, all
protocols were retyped if necessary
for clarity, rechecked for accuracy,
and then organized for initial data
analysis. In addition, each proto-
col was assigned a personal code
for confidentiality so that it could
be tracked throughout the entire
study.
Phase Three involved an in-depth
data analysis of every interview.
All 70 protocols were randomly
divided equally by site and given
to the four researchers at Temple
University for the first round of
analysis as described by. Each in-
terview was coded by a researcher
using constant comparative analy-
sis to reduce the raw data into a set
of preliminary patterns. After the
preliminary patterns were orga-
nized, the data were analyzed again
to reflect the theoretical framework
and extant literature base.
This preliminary analysis pro-
duced over 40 connected patterns
found throughout all of the 70 in-
terviews. Another deeper analysis
revealed many fundamental themes
found within the 40 patterns. The
themes were sorted again by the
Temple University researchers in
an exhaustive, face-to-face ex-
amination. This level of analysis
created nine categories and six
sub-themes applicable to the three
research questions.
A report summarizing all infor-
mation was subsequently sent to
each site coordinator as a member
check (Yin, 1994). The feedback
from the site coordinators was in
total agreement. The summary
report was accurate and no new
material was necessary for data
analysis and synthesis.
As appropriate for qualitative

52 Thalamus, Fall 2006
research, different methods of
verification were implemented to
ensure both internal and external
validity. Credible studies must
show dependable results and have
internal validity (Maxwell, 1996;
Merriam, 1998; Stake, 1995; Yin,
1994). Consequently, this area was
addressed in a number of ways
such as:
1. multiple researchers in mul-
tiple settings (e.g. each site
coordinator in each of the eight
geographic areas gathered
all of the data using the same
interview protocol and format
(Merriam, 1998);
2. data triangulation as four Tem-
ple University researchers ex-
amined the same raw data and
interpreted it through similar
themes and categories (Stake,
1995);
3. an extensive audit trail devel-
oped in order that the study
could be replicated or address
new, applicable research ques-
tions (Merriam, 1998; Miles
and Huberman, 1994; and
4. member checks to prevent
researcher bias and secure ac-
curacy of data (Maxwell, 1996;
Stake, 1995; Yin, 1994).
Of equal importance to qualita-
tive research is external validity or
how the results can be generalized
to other situations (Merriam, 1998).
This area was addressed through
an emphasis on reader generaliz-
ability (e.g. case-to-case transfer)
and analytical or theoretical gen-
eralizability which encourages new
theory in various fields (Merriam,
1998; Yin, 1994). Also, a multi-site
design was used to stress diversity
of the phenomenon of learning dis-
abilities in adults in other locations
(Merriam, 1998).
RESULTS
One theme that emerged from
the data analysis was acceptable
loss versus potential gain in the
disclosure process. It was one of
the prominent themes derived from
the larger study on self-disclosure.
This theme provided important
insights that helped unravel the
complexities of self-disclosure. In
part these complexities included
taking into account the context and
circumstances of the disclosure as
well as incorporating the dynamics
underlying the process all together.
The core of the self-disclosure
process for persons with learning
disabilities is personal risk as-
sessment. Typically, this kind of
assessment emanates from a busi-
ness model (evolving from cost/
benefit analysis), but it can also be
extended to personal issues such as
religion, medical status, and sexual
orientation in social contexts. In
essence, it is the mediating vari-
able between the dichotomy of ac-
ceptable loss or potential gain. In
the case of learning disabilities risk
must be factored into the self-dis-
closure process any time a person
with a learning disability chooses
to disclose. Most important, before
disclosing it is important to factor
in
1. one’s strengths and weaknesses
(self-knowledge),
2. the demands and “signals” of
the context where self-disclo-
sure takes place, and
3. the characteristics / attributes
of the person and/or culture
who is being disclosed to. This
has been characterized in the
adults with learning disabili-
ties research as “goodness of
fit” (Gerber, Ginsberg & Reiff,
1992)
In assessing risk, the outcome is
a decision that has two possibili-
ties - not to disclose, leading one to
the dynamic of acceptable loss or
the decision to disclose because of
the potential gain emanating from
the disclosure process. Acceptable
loss infers that the decision of not
disclosing will make the quality
of a social interaction (in one or
many contexts), the work environ-
ment or a personal situation of less
value because full understanding
of learning disabilities and its
manifestations are not part of the
relationship. (This coincides with
the finding of another part of the
study regarding “secrets” and the
management of information, par-
ticularly with the invisibility of
learning disabilities.)
Potential gain denotes an ex-
pectation that something positive
(generally greater understanding
and in some cases accommodation)
will ensue from self-disclosure and
increase the quality of the context
in which learning disabilities is
disclosed. Two good examples of
potential gain stem from the ben-
efits of disclosure using Section
504 and the ADA mentioned above.
In other contexts (i.e. community
and leisure) the benefits could be
more subtle and less tangible. Also,
the motivation to self-disclose
for potential gain pre-supposes
the ability to be an effective self-
advocate. Therefore, the skills of
ongoing self-advocacy are deemed
very important in whatever context
disclosure took place.
The Complexities of acceptable
loss and potential gain
What becomes apparent by ex-
amining the words of the partici-
pants of the study is that despite the
dichotomy of acceptable loss and

53
Thalamus, Volume 24, Number 1
potential gain there are variations
of these concepts within specific
contexts and circumstances. In a
general sense, consider the overall
dilemma and note the ambivalence
in three of the study’s participants.
“…it’s important to lay low, and
honestly that is sort of an uncom-
fortable feeling. I like to be honest
and open, but I am not quite sure
what the right answer is for get-
ting what I need to do my job well
versus making myself vulnerable.
So I’m going to have to think about
it. It’s really a trade-off, and it’s a
delicate balance….I just wish I felt
a little more comfortable with dis-
closure.” or the ambivalence seen
in the following quote: “I have to
be guarded about it [my LD] …I
have to be very careful that I am
not in a situation where I blurt out
a response that’s not quite right. I
sort of have to be guarded in my in-
teractions” and finally despite the
inclination to be helpful a personal
impasse: “I want to help others,
but [I] do not want to talk about
my LD.”
It is also interesting how adults
with learning disabilities think
about disclosure in the contexts
where they interact. The result is a
differential response depending on
the context and the audience. “At
my work situation, I need to figure
out a good strategy on this because
I still don’t feel comfortable divulg-
ing any of this. With my friends it
is not a big deal, so I don’t mind
talking about it with them…. But at
work I ‘m continuing to feel very
guarded.”
Other responses reveal the stra-
tegic use of disclosure. “… [I]
save it for when it’s necessary or
instances where you feel it will
help someone.” and “I’m really not
bothered by my LD. I use it as a
weapon [to get accommodations]
or get what I want when I am in
a negative situation.” and “ I feel
like at the job the ‘learning disabil-
ity’ is written across my head, but
on the job interview I cover it up
pretty well.”
and “I might disclose in the future
to get accommodations” Last, “I
am generally pretty open about
my LD at my current job. I was not
comfortable talking about my LD
with my previous boss due to the
personality difference between us.”
In employment settings where
disclosure of a disability has
numerous protections under the
ADA, the responses about disclo-
sure highlight the difference of
acceptable loss and potential gain.
An example of an acceptable loss
statement includes: “I did not talk
about it with a past employer be-
cause I thought it would do more
harm than good.”
Then there is the use of disclo-
sure in a strategic sense, when
potential gain is a possibility, but
it is couched in risk. As a prime ex-
ample: “If it keeps you from losing
your job – do it!”
In an educational context where
accommodations are mandated by
Section 504 acceptable loss and
potential gain are seen in the fol-
lowing quotes: “[I have] never had
a bad experience with a college
professor, but I do not want to risk
it.” or “…try to use it to get accom-
modations such as more time on
your SATs” and “[Disclose] to
gain accommodations – computer
room, note-taker, [and financial
aid]. and finally “I would only talk
about it to get help or improve on
it.”
In the contexts of community
where the outcomes of self-disclo-
sure are not certain the expressed
feelings are varied: “Yes, I have
spoken about it in my church group
because I know I can talk about it
with them. [I] feel safe. [I] really do
not talk about it any other place.”
or “No, I would not feel comfort-
able [disclosing]. I may have
concerns, but I don’t want to bring
it up….I don’t really know why
– maybe people [would] think I am
dumb.”
What is notable about the quota-
tions used as examples in a variety
of adult settings is that all of them
are nuanced according the context
and situation where disclosure
might take place. Safe to say that
the underpinning of each statement
from the participants in this study
is that risk mediates the outcomes,
either acceptable loss or potential
gain.
DISCUSSION
Writing about the issue of stigma
many years ago Goffman, (1963)
pointed out that stigma was pre-
vented by “the management of
information”. He also went on
the say (1963) that stigma is the
“discrepancy between virtual and
actual identity” (p. 19). This obser-
vation holds true for the dichotomy
of the disclosure issue - acceptable
loss and potential gain. Persons
with learning disabilities are the
“custodians” of how others see them
– either as a person who is learning
disabled or not learning disabled.
The data indicate that adults with
learning disabilities do not disclose
when they perceive a person or
persons in a specific context as a
threat when “new” information is
shared. Ultimately, they are willing
to absorb acceptable loss for an
outcome that possibly can be more
harsh – stigma, ostracism and
misunderstanding. But the learning
disability inadvertently becomes

54 Thalamus, Fall 2006
part of the relationship because
learning disability becomes a
“secret” (Price, Gerber, and Mul-
ligan, submitted for publication)
that must be protected at all costs.
Moreover, it must be remembered
that these feelings are not new
because typically they were expe-
rienced to some degree during their
school-age years, particularly in
peer relationships.
Potential gain is far more con-
crete in the contexts of education
and employment. That is not sur-
prising because the participants in
this study knew how accommoda-
tions could benefit them. It is only
when it comes to other contexts
(i.e. community, leisure, social
and personal relationships) that the
impact of disclosure is more subtle.
It is felt in the quality of interac-
tions, in communication, and in the
dynamic understanding that make
quality relationships.
If the key to empowerment is the
ability disclose effectively in the
many contexts of adulthood then it
is prudent to rely on the guidance
provided in the current study. Self-
disclosure is complex, it is context-
driven, and it is filled with nuance.
For adults with learning disabili-
ties disclosure is a choice that can
make a difference in their lives
whether it is done or it is not done.
Ultimately, disclosure falls neatly
under the umbrella of empower-
ment for persons with learning dis-
abilities. It must be remembered,
however, when the choice is not to
disclose for whatever reasons, that
that choice is an adult decision that
has elements of empowerment as
well!
LIMITATIONS
Greater utility of the findings
could be possible if the data were
analyzed on a number of demo-
graphic variables such as gender,
age, marital status and job stabil-
ity. Moreover, follow-up efforts by
asking questions framed from the
dichotomy of acceptable loss and
potential gain could foster more
precision in understanding those
concepts in adults with learning
disabilities. That strategy might
prove to be fruitful in future inves-
tigation.
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AUTHORS NOTE
The authors gratefully acknowl-
edge the ACLD Foundation for
funding this study. Thanks are
also intended to the individuals
who were research site coordina-
tors for this work: Dr. Eleanor Hig-
gins formally of the Frostig Center,
Pasadena, CA; Ms. Noelle Kurth,
Kansas University, Lawrence, KS;
Dr. Steve Nourse, Pacific Lutheran
University, Tacoma, WA; Dr. James
Patton, Pro-Ed, Austin, TX; Dr.
Henry Reiff, McDaniel College,
Westminster, MD; Dr. Arlyn Roff-
man, Lesley University, Cambridge,
MA; Dr. Ann Ryan, the University
of St. Thomas, Minneapolis, MN;
and Dr. Mary Sarver, the Univer-
sity of South Florida, Tampa, FL.
Additionally, thanks are extended
to Patty Williams of Temple Uni-
versity for her assistance in data
analysis.
ABOUT THE AUTHOR
Paul J. Gerber, Ph.D., is Profes-
sor of Education in the Department
of Special Education and Disabil-
ity Policy and the Department of
Psychological Foundations at Vir-
ginia Commonwealth University in
Richmond, Virginia.
Lynda A. Price, Ph.D. is Associate
Professor of Special Education at
Temple University in Philadelphia,
Pennsylvania.

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58 Thalamus, Fall 2006